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2011-2012 IACC Autism Spectrum Disorder Research Portfolio Analysis Report – COMING SOON!

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The Office of Autism Research Coordination (OARC), on behalf of the Interagency Autism Coordinating Committee (IACC), annually conducts a comprehensive analysis of autism spectrum disorder (ASD) research portfolios of major U.S. Federal agencies and private organizations, published in the annual IACC ASD Research Portfolio Analysis Report.  The 2011-2012 IACC ASD Research Portfolio Analysis Report will be released in the near future.

The 2011-2012 IACC Portfolio Analysis Report will cover ASD-related research project funding from a total of 12 federal agencies and 8 private organizations, describing how funded projects align with the research objectives laid out in the 2011 IACC Strategic Plan for ASD Research, and providing additional analyses to identify funding trends that may be helpful in assessing progress and setting future goals.    

In addition to providing an in-depth analysis of ASD research funding in 2011 and 2012, the 2011-2012 IACC Portfolio Analysis Report also will include a five-year overview of ASD research funding by U.S. government and private sectors from 2008 to 2012.  Summary data have been published in the 2013 IACC ASD Strategic Plan Update, and the 2011-2012 Portfolio Analysis Report will provide further detail on 5-year trends in funding.  The full data set used to prepare the 2011-2012 IACC Portfolio Analysis Report will be released in the online companion database, the IACC/OARC ASD Research Portfolio Analysis Web Tool for public access.

The five-year cumulative funding tables that describe progress made toward IACC Strategic Plan objectives, published in the 2013 IACC ASD Strategic Plan Update, can be found below:

Question 1 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Develop, with existing tools, at least one efficient diagnostic instrument (i.e., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

IACC Recommended Budget: $5,300,000 over 2 years
1.1
$75,000
2 projects

1.S.A
$4,728,120
15 projects

1.S.A
$4,963,192
15 projects

1.S.A
$2,387,955
8 projects

1.S.A
$2,214,544
8 projects

$14,368,811
1.S.A. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: Though several projects are underway to develop efficient screeners and diagnostic tools, the overarching aim of this objective has not yet been achieved.

Remaining Gaps, Needs, and Opportunities: In addition to efficiency, emphasis should be placed on developing cost-effective, performance-based tools, and on validating these across diverse populations. Recent RFAs issued by NIMH and Autism Speaks that focus on parental engagement and early access to care could result in projects that address this objective. Currently, many screening tools exist, and these tools in many cases can be adapted for broader uses, but improved diagnostic tools remain an outstanding need.
 
Validate and improve the sensitivity and specificity of new or existing screening and diagnostic tools, including comparative studies of general developmental screening versus autism-specific screening tools, in both high-risk and population-based samples, including those from resource-poor international settings and those that are diverse in terms of age, socio-economic status, race, ethnicity, gender, characteristics of ASD, and general level of functioning by 2012.

IACC Recommended Budget: $5,400,000 over 3 years
1.2
$1,246,922
8 projects

1.S.B
$3,973,711
11 projects

1.S.B
$2,443,557
11 projects

1.S.B
$970,284
9 projects

1.S.B
$2,126,824
12 projects

$10,761,298
1.S.B. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: Efforts to validate screening tools in diverse populations have begun, including ACF and CDC-funded work with a general developmental screener in Native American populations. More efforts are needed, however, to cover other diverse populations.

Remaining Gaps, Needs, and Opportunities: There is a need for more comparative studies between general developmental screeners and autism-specific tools. Remaining needs in this area are promotion of family engagement and follow-through, training of intervention and primary care providers and family members, and development of free and validated diagnostic tools for international communities.
 
Conduct at least three studies to identify reasons for the health disparities in accessing early screening and diagnosis services, including identification of barriers to implementation of and access to screening, diagnosis, referral, and early intervention services among diverse populations, as defined by socioeconomic status, race, ethnicity, and gender of the child, by 2012.

IACC Recommended Budget: $2,000,000 over 2 years
N/A

1.S.C
$139,072
1 project

1.S.C
$0
0 projects

1.S.C
$28,000
1 project

1.S.C
$629,521
3 projects

$796,593
1.S.C. Funding: The recommended budget was partially met.

Progress: The projects supported are only a beginning and more needs to be done to address this objective.

Remaining Gaps, Needs, and Opportunities: The studies coded to this objective do not focus on identifying reasons for early screening and diagnosis disparities; instead, they are aimed at developing tools to address these disparities. The progress in this area is poor for autism relative to other disease fields, and the more sophisticated approaches employed in fields such as AIDS prevention should be applied to autism. More work should be done to identify the reasons for disparities and to validate the tools that are being developed. A barrier to progress is the need for qualitative studies and the difficulty in securing funding for such studies.
 
Conduct at least two studies to understand the impact of early diagnosis on choice of intervention and outcomes by 2015.

IACC Recommended Budget: $6,000,000 over 5 years
N/A

1.S.D
$0
0 projects

1.S.D
$0
0 projects

1.S.D
$0
0 projects

1.S.D
$0
0 projects

$0
1.S.D. Funding: There has been no specific funding for this objective.

Progress: No projects that are specifically targeted to this area have been initiated, though there are some projects coded to Question 4 that represent progress on this objective (e.g., Early Start Denver Model studies that study children who were diagnosed early and some of their outcomes following treatment, and studies coded to 4.S.F. that investigate early interventions for toddlers with ASD).

Remaining Gaps, Needs, and Opportunities: The Planning Group felt that the wording of this objective is confusing. Based on transcripts from when this objective originated, it appears that the committee wanted to better understand if early diagnosis led to early intervention, and if so, if that led to better outcomes. Some of the questions that could be asked are whether or not early diagnosis leads to early intervention, and whether or not early diagnosis is always associated with better outcomes when compared to late diagnosis, or if the outcomes depend on the type of early intervention used. In future revisions of the Strategic Plan, the committee may want to refocus this objective.
 
Conduct at least one study to determine the positive predictive value and clinical utility (e.g., prediction of co-occurring conditions, family planning) of chromosomal microarray genetic testing for detecting genetic diagnoses for ASD in a clinical setting by 2012.

IACC Recommended Budget: $9,600,000 over 5 years
N/A

N/A

1.S.E
$2,180,042
3 projects

1.S.E
$690,019
1 project

1.S.E
$1,273,122
4 projects

$4,143,183
1.S.E. Funding: The recommended budget for this objective was partially met.

Progress: Microarray testing is now recommended in AAP guidelines. The utility of this testing is more clear in cases where there is already a concern than for diagnostic use in the general population.

Remaining Gaps, Needs, and Opportunities: There is a need to better understand the relationship of genotype to phenotype, implications of genotype for treatment or medical management options, and to understand the potential impact of microarray testing on providers and families.
 
Convene a workshop to examine the ethical, legal, and social implications of ASD research by 2011. The workshop should define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.

IACC Recommended Budget: $35,000 over 1 year
*This objective was completed in 2011
N/A

N/A

1.S.F
$0
0 projects

1.S.F*
$71,489
1 project

1.S.F*
$0
0 projects

$71,489
1.S.F. Funding: The recommended budget for this objective was met.

Progress: The objective was accomplished as the committee intended. NIH held a workshop, "The Ethical, Legal and Social Implications of Autism Spectrum Disorder Research," ASAN held a symposium This link exits the Interagency Autism Coordinating Committee Web site of the same title on this topic, and Autism Speaks held a related conference, "Ethics of Communicating Scientific Findings of Autism Risk." This link exits the Interagency Autism Coordinating Committee Web site

Remaining Gaps, Needs, and Opportunities: Although the workshop called for was completed, this area remains of interest due to the ethical concerns that will continue to arise as screening tools progress. Responsible communication of risk and examination of barriers to care and services for positively screened patients are among these concerns. This topic should be revisited continually to address issues that may arise as the field advances. Additional workshops would be one way to continue to work on these issues.
 
Identify behavioral and biological markers that separately, or in combination, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD, and evaluate whether these risk markers or profiles can improve early identification through heightened developmental monitoring and screening by 2014.

IACC Recommended Budget: $33,300,000 over 5 years
1.3
$2,885,940
14 projects

1.L.A
$16,465,034
43 projects

1.L.A
$13,270,045
45 projects

1.L.A
$12,416,466
43 projects

1.L.A
$12,894,621
40 projects

$57,932,106
1.L.A. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: More than 40 projects have been supported in this area, but most projects are still in the discovery phase. Identifying reliable early biomarkers has been challenging, but some progress has been made. More work is needed to achieve the full intent of the objective.

Remaining Gaps, Needs, and Opportunities:   Remaining research needs include continued discovery of biomarkers, linking biomarkers to treatment response, validation of biomarkers discovered in high risk populations for applicability in the general population, and evaluation of whether these biomarkers translate to improvement in screening and diagnosis real-world settings. There is also a need for biomarkers that are cost-effective.
 
Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

IACC Recommended Budget: $71,100,000 over 5 years
1.4
$5,773,203
18 projects

1.L.B
$8,760,010
34 projects

1.L.B
$15,228,060
52 projects

1.L.B
$9,376,400
42 projects

1.L.B
$12,813,396
39 projects

$51,951,069
1.L.B. Funding: The recommended budget was partially met.

Progress: Over 50 projects were supported in this area. While behavioral and/or biological heterogeneity are well covered by existing projects, gaps still exist in relating these measures to etiology and risk, treatment response, and/or outcomes.

Remaining Gaps, Needs, and Opportunities: There was a discussion of whether this objective should be expanded to be compatible with the Research Domain Criteria (RDoC) now being used by NIMH, which focus on functional domains rather than disorder-specific characteristics.
 
Identify and develop measures to assess at least three "continuous dimensions" (i.e., social reciprocity, communication disorders, and repetitive/restrictive behaviors) of ASD symptoms and severity that can be used by practitioners and/or families to assess response to intervention for people with ASD across the lifespan by 2016.

IACC Recommended Budget: $18,500,000 over 5 years
1.5
$912,159
2 projects

1.L.C
$861,069
6 projects

1.L.C
$3,893,622
22 projects

1.L.C
$2,353,440
15 projects

1.L.C
$2,600,028
15 projects

$10,620,318
1.L.C. Funding: The recommended budget was partially met.

Progress: Basic science and clinical aspects of the research are underway, but more work is needed for the studies to be applied for use by practitioners and/or families.

Remaining Gaps, Needs, and Opportunities: There is a need for finer ways to quantify social behavior and detect change in response to successful treatment. There is a need to move toward performance-based measures and away from the checklist approach.
 
Not specific to any objective (Core/Other Activities) 1.Core/Other Activities
$18,229,985
63 projects

1.Core/Other Activities
$9,766,926
37 projects

1.Core/Other Activities
$3,643,562
18 projects

1.Core/Other Activities
$2,310,877
16 projects

1.Core/Other Activities
$2,175,749
13 projects

$36,127,099
Total funding for Question 1 $29,123,209
107 projects
$44,693,942
147 projects
$45,622,080
166 projects
$30,604,930 136 projects $36,727,805
134 projects
$186,771,966

Table 1: Question 1 Cumulative Funding Table, see appendix for a color-coding key and further details.

Question 2 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Support at least four research projects to identify mechanisms of fever, metabolic and/or immune system interactions with the central nervous system that may influence ASD during prenatal-postnatal life by 2010 (Fever studies to be started by 2012).

IACC Recommended Budget: $9,800,000 over 4 years
2.2
$3,377,568
18 projects

2.S.A
$3,584,634
30 projects

2.S.A
$4,972,407
37 projects

2.S.A
$2,013,417
25 projects

2.S.A
$3,049,827
26 projects

$16,997,853
2.S.A. Funding: The recommended budget for this objective was met.

Progress: Many projects were funded in this area (approximately 20-30 per year), but the field is still developing, and emphasis on this objective should continue in the future. Scientific advances have been made in linking maternal innate immune function and immune-system challenge to aspects of ASD. Methodological advances in the field include the development of animal models for study of the role of the immune system in ASD and PET ligands for imaging microglial activation.

Remaining Gaps, Needs and Opportunities: There is a need for a well-designed, multi-site clinical study of clinical effects of fever and to develop standard measures of fever and behavioral/cognitive outcomes. Questions about fever could be integrated into funded epidemiological studies. There is also interest in further work on metabolic and mitochondrial issues, but in order for this work to be done, there is a need for validation and standardization of measures for assessment of oxidative stress and mitochondrial function. More guidance is needed on the key questions for this field to answer – a workshop to define these methodologies may be helpful. One of the key questions is to determine whether it is the body temperature associated with fever or some consequence of immune activation and production of the febrile state that leads to amelioration of cognitive function.
 
Launch three studies that specifically focus on the neurodevelopment of females with ASD, spanning basic to clinical research on sex differences by 2011.

IACC Recommended Budget: $8,900,000 over 5 years
2.3
$0
0 projects

2.S.B
$1,370,107
5 projects

2.S.B
$1,096,678
5 projects

2.S.B
$150,000
1 project

2.S.B
$3,239,998
5 projects

$5,856,783
2.S.B. Funding: The recommended budget was partially met.

Progress: More than the minimum three studies recommended were launched, but further work is needed in this area. Studies have found that females with ASD often have a higher burden of ASD genetic risk mutations than males, suggesting a gender-associated protective effect in females. Research on factors protecting females from developing ASD symptoms even when challenged with genetic mutations that lead to ASD in boys may help to identify approaches to prevent development of ASD symptoms in both genders.

Remaining Gaps, Needs and Opportunities:  Studies of protective and compensatory effects in females and differential response to treatment based on gender are promising areas that could help with future prevention and effective, personalized treatment efforts. Beyond genetic differences, it is important to determine whether other biological features, such as differences in neuropathology, are found in the two sexes.
 
Identify ways to increase awareness among the autism spectrum community of the potential value of brain and tissue donation to further basic research by 2011.

IACC Recommended Budget: $1,400,000 over 2 years
2.4
$0
0 projects

2.S.C
$726,911
2 projects

2.S.C
$17,000
1 project

2.S.C
$22,000
1 project

2.S.C
$90,120
1 project

$856,031
2.S.C. Funding: The recommended budget was partially met.

Progress: Loss of autism brain samples due to a freezer malfunction at a major brain bank in 2012 has caused a loss of progress in ASD research. Thus, there is a need for new samples to replace those that were lost and to begin expanding the amount of brain tissue available for ASD research. The Autism BrainNet initiative is a multi-site, privately funded effort that will target autism specifically and will include an autism-specific brain donation outreach campaign that addresses this objective.   NIH launched the NIH Neurobiobank ($5 million), which includes samples for research on autism as well as other brain disorders, and has an associated online publication "Why Brain Donation? A Legacy of Hope" to increase awareness about brain donation. Both of these initiatives are not yet reflected in the Portfolio Analysis, because they began in 2013. In addition to these new brain banking efforts, the NICHD Brain and Tissue Bank This link exits the Interagency Autism Coordinating Committee Web site produced a video This link exits the Interagency Autism Coordinating Committee Web site for their website to generally increase awareness the potential value of brain and tissue donation to further basic research on neurodevelopmental and pediatric conditions. Since the effort is not autism-specific, it was not captured in the portfolio analysis.

Remaining Gaps, Needs and Opportunities: There is an ongoing and urgent need to raise awareness of the importance of brain and tissue donation for research, to standardize the methodology of collection and to increase the supply of such tissues. Autism BrainNet, a private outreach and postmortem brain donation program dedicated to research on autism and related disorders will integrate the Autism Tissue Program (ATP) with collection sites at Mount Sinai School of Medicine, the University of Texas Southwestern Medical School, and the University of California, Davis MIND Institute.
 
Launch three studies that target improved understanding of the underlying biological pathways of genetic conditions related to autism (e.g., Fragile X, Rett syndrome, tuberous sclerosis complex) and how these conditions inform risk assessment and individualized intervention by 2012.

IACC Recommended Budget: $9,000,000 over 5 years
N/A

2.S.D
$9,171,542
48 projects

2.S.D
$13,162,905
57 projects

2.S.D
$12,360,956
64 projects

2.S.D
$18,452,242
83 projects

$53,147,645
2.S.D. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress:  A large number of projects were funded that address this objective. Investment in this area has doubled since 2009, and in 2013, NIH began funding an ACE center focused on tuberous sclerosis. Much is being learned about conditions related to autism that can be applied to autism. This objective is on track.

Remaining Gaps, Needs and Opportunities:  The next step will be to translate findings in this area into clinically useful therapies.
 
Launch three studies that target the underlying biological mechanisms of co-occurring conditions with autism, including seizures/epilepsy, sleep disorders, wandering/elopement behavior, and familial autoimmune disorders, by 2012.

IACC Recommended Budget: $9,000,000 over 5 years
N/A

2.S.E
$3,893,300
11 projects

2.S.E
$4,611,058
14 projects

2.S.E
$4,807,760
23 projects

2.S.E
$3,218,960
22 projects

$16,531,078
2.S.E. Funding: The recommended budget for this objective was met.

Progress: More than twenty projects were funded that were specific to this objective. Scientific advances in this area include mechanistic and mutation linkages of epilepsy and ASD-like behaviors, as well as circadian rhythm disruptions downstream of ASD-associated mutations.

Remaining Gaps, Needs and Opportunities: While studies on co-occurring conditions have been initiated, a greater depth of understanding is needed. Further efforts are needed, especially on wandering, metabolic and immune conditions related to ASD, as well as a systems-biology approach to understand how these co-occurring conditions are related to ASD.  In order to more accurately assess progress, wandering/elopement should be considered separately from seizures/epilepsy/sleep. Familial autoimmune disorders could be moved to 2.S.A to be grouped with other immune-related issues.
 
Launch two studies that focus on prospective characterization of children with reported regression to investigate potential risk factors by 2012.

IACC Recommended Budget: $4,500,000 over 5 years
N/A

2.S.F
$0
0 projects

2.S.F
$401,595
2 projects

2.S.F
$339,709
3 projects

2.S.F
$251,830
2 projects

$993,134
2.S.F. Funding: The recommended budget was partially met.

Progress:  The number of recommended projects has been met and progress is being made, but further work is needed to understand how autism develops. Some recent data suggest that regression may be more of a continuum than a distinct type of autism, and several studies have provided new descriptions of ASD developmental trajectories. However, other studies have found some differences between children with reported regression vs. children without reported regression.

Remaining Gaps, Needs and Opportunities:  Further work is needed to better understand subtypes and potential biomarkers. High-risk siblings may present an opportunity for studying regression prospectively.
 
Support five studies that associate specific genotypes with functional or structural phenotypes, including behavioral and medical phenotypes (e.g., nonverbal individuals with ASD and those with cognitive impairments) by 2015.

IACC Recommended Budget: $22,600,000 over 5 years
N/A

2.S.G
$5,903,875
21 projects

2.S.G
$9,149,672
39 projects

2.S.G
$11,105,408
45 projects

2.S.G
$15,618,073
44 projects

$41,777,028
2.S.G. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: Over 40 projects have been funded in this area, and the projects cover the areas described, so the objective appears to be on track.

Remaining Gaps, Needs and Opportunities:  With so many studies initiated, the next step is to encourage multi-site collaboration in order to achieve the large number of subjects required for meaningful data interpretation.
 
Complete a large-scale, multidisciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of individuals, with a special emphasis on females, youths, and adults with ASD, change over time as compared to typically developing people by 2020.

IACC Recommended Budget: $126,200,000 over 12 years
2.5
$8,523,806
49 projects

2.L.A
$2,721,384
6 projects

2.L.A
$2,283,875
6 projects

2.L.A
$972,559
5 projects

2.L.A
$6,160,017
9 projects

$20,661,641
2.L.A. Funding: The recommended budget was partially met.

Progress: Several projects have been funded in this area, and the ACE Network continues to collect data relevant to this objective.

Remaining Gaps, Needs and Opportunities: Though this research is underway, more clinical studies are needed over a longer trajectory to identify issues faced as people with ASD age, especially with regard to risk factors for other medical conditions. Another remaining need is that of standardization of data collection and analysis methods.
 
Launch at least three studies that evaluate the applicability of ASD phenotype and/or biological signature findings for performing diagnosis, risk assessment, or clinical intervention by 2015.

IACC Recommended Budget: $7,200,000 over 5 years
N/A

2.L.B
$1,532,262
16 projects

2.L.B
$450,271
2 projects

2.L.B
$324,241
4 projects

2.L.B
$1,321,632  
8 projects

$3,628,406
2.L.B. Funding: The recommended budget was partially met.

Progress: Imaging studies have developed activity signatures of the ASD brain. While more than 3 studies were launched, more funding and work in this area are needed.

Remaining Gaps, Needs and Opportunities: This objective also requires standardization of data collection and analysis methods, as well as collaboration among investigators to pool data. Increased emphasis must be placed on conducting biological evaluations of very young children at risk for ASD and on collecting biological samples from these young children, to enable research into the establishment of biomarkers or risk markers in this population.
 
Not specific to any objective (Core/Other Activities) 2.Core/Other Activities
$23,701,450
133 projects

2.Core/Other Activities
$34,348,932
163 projects

2.Core/Other Activities
$55,114,888
246 projects

2.Core/Other Activities
$41,027,141
227 projects

2.Core/Other Activities
$48,710,997
260 projects

$202,903,408
Total funding for Question 2 $40,621,403
202 projects

$63,252,949
302 projects

$91,260,349
409 projects

$73,123,190
398 projects

$100,113,696
460 projects

$363,353,007*

Table 2: Question 2 Cumulative Funding Table, see appendix for a color-coding key and further detail.

* This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for the years 2008, 2009, and 2010 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

Question 3 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. Studies should investigate factors contributing to phenotypic variation across individuals who share an identified genetic variant and stratify subjects according to behavioral, cognitive, and clinical features.

IACC Recommended Budget: $43,700,000 over 4 years
3.2
$4,065,392
14 projects

3.S.A
$13,926,663
11 projects

3.S.A
$16,688,932
14 projects

3.S.A
$2,207,214
7 projects

3.S.A
$1,699,432
6 projects

$38,587,633
3.S.A. Funding: The recommended budget was partially met, and is approaching the recommended budget.

Progress: Progress has been made on this objective through the funding of several GWAS and sequencing projects. The current number of 6,000 GWAS subjects falls short of the goal of 20,000, but the number of whole exome sequences far exceeds 1,200, and could also reach 6,000 in the next year. Whole exome sequencing has identified 7-10 candidate genes, and promises to move closer to the goal of 50 in the future. Progress is being made in CNV studies. Overall, the work is on target.

Remaining Gaps, Needs, and Opportunities: More subtyping and genotype-phenotype work outside of syndromic forms of autism, as well as natural history studies, are needed.
 
Within the highest-priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011.

IACC Recommended Budget: $3,500,000 over 3 years
3.3
$713,227
4 projects

3.S.B
$0
0 projects

3.S.B
$0
0 projects

3.S.B
$0
0 projects

3.S.B
$100,000
1 project

$813,227
3.S.B. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: There has been progress on the understanding of exposures, but more work needs to be done to apply this directly to autism research.  Progress has made through methodological advances embedded in epidemiological studies funded by NIEHS, but those projects are not captured by the Portfolio Analysis because they are not specific to autism.

Remaining Gaps, Needs, and Opportunities: The primary obstacle to completion of this objective has been availability of funding to identify and validate exposure markers. There is a need for biomarkers of exposure; exposomics should be a priority area for future research.
 
Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene-environment research by 2011.

IACC Recommended Budget: $27,800,000 over 5 years
3.4
$4,703,867
4 projects

3.S.C
$8,033,454
9 projects

3.S.C
$4,824,779
8 projects

3.S.C
$5,714,408
10 projects

3.S.C
$3,626,803
9 projects

$26,903,311
3.S.C. Funding: The recommended budget was nearly met, but work still needs to continue on this objective.

Progress: The funding allocated to this area so far has primarily supported building infrastructure that can now be expanded to include more subjects, more data, and more analytical projects.  Studies such as the MARBLES (Markers of Autism Risk in Babies Learning Early Signs) cohort study and the CHARGE (Childhood Autism Risks from Genetics and the Environment) study are included under this objective.

Remaining Gaps, Needs, and Opportunities: Continued benefit will be derived from past investments as these resources are expanded and pooled.
 
Enhance existing case-control studies to enroll racially and ethnically diverse populations affected by ASD by 2011.

IACC Recommended Budget: $3,300,000 over 5 years
3.5
$84,628
2 projects

3.S.D
$103,827
3 projects

3.S.D
$0
0 projects

3.S.D
$0
0 projects

3.S.D
$0
0 projects

$188,455
3.S.D. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: The UCLA ACE center coded to 3.L.B. reflects some progress on this objective. CADDRE also includes racially diverse participants from multiple urban centers.  Overall, however, both funding and outcomes related to this objective are far below the goal.

Remaining Gaps, Needs, and Opportunities: There is a need for studies around high exposure, low socioeconomic status populations.
 
Support at least two studies to determine if there are subpopulations that are more susceptible to environmental exposures (e.g., immune challenges related to infections, vaccinations, or underlying autoimmune problems) by 2012.

IACC Recommended Budget: $8,000,000 over 2 years
N/A

3.S.E
$1,739,200
13 projects

3.S.E
$1,162,679
10 projects

3.S.E
$419,215
5 projects

3.S.E
$287,218
5 projects

$3,608,312
3.S.E. Funding: The recommended budget was partially met.

Progress: Several projects were funded in this area, going beyond the minimum recommended by the committee, but the projects have been smaller than what was expected. However, even with smaller studies, a large amount of data has been collected relating to immunological conditions in children and mothers.

Remaining Gaps, Needs, and Opportunities: More work is needed to analyze and interpret available data.
 
Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report "Autism and the Environment: Challenges and Opportunities for Research" as potential causes of ASD by 2012.

IACC Recommended Budget: $56,000,000 over 2 years (revised in 2010)
3.1
$7,600,673
19 projects

3.S.F
$2,952,960
14 projects

3.S.F
$166,362
5 projects

3.S.F
$0
3 projects

3.S.F
$75,000
1 project

$10,794,995
3.S.F. Funding: The recommended budget was partially met.

Progress: There has been a significant decrease in the number of studies related to this objective.

Remaining Gaps, Needs, and Opportunities: Further work in this area is needed, and work should focus on identifying the directionality of associations between environmental factors and ASD (causal, reactive, or independent) in order to be applied to prevention and the development of therapeutics. Sophisticated methods that are being applied in other fields need to be brought into autism research.
 
Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011.

IACC Recommended Budget: $35,000 over 1 year
*This objective was completed in 2011
N/A

N/A

3.S.G
$0
0 projects

3.S.G*
$46,991
1 project

3.S.G*
$0
0 projects

$46,991
3.S.G. Funding: The workshop identified in this objective was funded and held by NIEHS in 2011.

Progress :A workshop on this topic, "Autism and the Environment: New Ideas for Advancing the Science," was convened by the National Institute of Environmental Health Sciences (NIEHS) in 2010. (a meeting report is available). Therefore, this objective has been completed.

Remaining Gaps, Needs, and Opportunities: Next steps for this area include the need to develop an exposome. A forum for the sharing of new technologies and standardized assessments would also be useful in moving this field forward.
 
Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:
  • Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and
  • Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.
Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations.

IACC Recommended Budget: $12,000,000 over 5 years
N/A

N/A

3.S.H
$1,527,866
13 projects

3.S.H
$4,657,095
16 projects

3.S.H
$4,096,317
13 projects

$10,281,278
3.S.H. Funding: The recommended budget was partially met, and is approaching the recommended budget.

Progress: The funded projects cover the objective well; there are 32 projects that are related to this objective, though more projects focus on use of databases than on special populations. A positive element of progress for this objective is the existence of large monitoring databases and projects that capitalize on those resources, such as iCARE and MINERvA.

Remaining Gaps, Needs, and Opportunities: While progress is being made in this area, and it must be maintained in order to achieve this objective.
 
Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012.

IACC Recommended Budget: $1,000,000 over 2 years
N/A

N/A

3.S.I
$53,960
3 projects

3.S.I
$439,971
4 projects

3.S.I
$255,332
6 projects

$749,263
3.S.I. Funding: The recommended budget was partially met.

Progress: The number of projects in this area has been growing, with 6 projects in 2012. The number of funded projects is large relative to the amount of funding, indicating that each of the projects is small, which suggests that these projects will not be sufficient in scope to complete this objective.

Remaining Gaps, Needs, and Opportunities: The high cost of required technology could be a barrier to the completion of this objective. These smaller pilot studies are potentially underpowered. The question of sample availability is important for this objective, along with raising researcher awareness of sample repositories.
 
Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012.

IACC Recommended Budget: $20,000,000 over 5 years
N/A

N/A

3.S.J
$5,072,389
15 projects

3.S.J
$5,341,237
19 projects

3.S.J
$6,122,724
22 projects

$16,536,350
3.S.J. Funding: The recommended budget was partially met, and the annualized recommended budget targets were met for all 3 years since the objective was introduced; therefore, the funding for this objective is on track. If this funding trend continues, the objective's recommended budget will be met within the recommended 5 year timeframe.

Progress: More than the recommended number of projects have been funded, with 22 projects supported in 2012. This is a growing area of research, and the current momentum in this area should be maintained.

Remaining Gaps, Needs, and Opportunities:  An important technological need for this objective is the development of robust epigenetic measurements for small biological samples, such a blood spots. A possible barrier to research in this area is the availability and preservation quality of these samples. Large funded studies such as MARBLES might provide an opportunity to collect samples. If samples are made available, that may catalyze research in this area.
 
Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012.

IACC Recommended Budget: $1,535,000 over 3 years
N/A

N/A

3.S.K
$733,922
5 projects

3.S.K
$463,841
3 projects

3.S.K
$90,000
3 projects

$1,287,763
3.S.K. Funding: The recommended budget was partially met. However, the yearly funding decreased significantly from 2010-2012. It should be noted that this objective overlaps partially with 2.S.B., which is focused on research on sex differences in ASD, and 4.S.B., which focuses on development of animal models that can be used for understanding molecular and neural pathways that can be targeted by interventions. Genetic pathways that play a role in gender differences and other molecular and neural pathways may interact with environmental factors, so funding for these objectives could reflect progress on the goals of 3.S.K.

Progress: Projects by Tychele Turner at Johns Hopkins and Donna Werling at UCLA that are using animal models to investigate sex differences in autism are coded to 2.S.B. The following 2010 workshop sponsored by NIEHS, Autism and the Environment: Advancing the Science, touched on this topic, but it was not the main focus of the workshop.

Remaining Gaps, Needs, and Opportunities:  The development of animal models for more broad ASD research is coded to question 4, and the use of such models to answer environmental exposure questions is a next step for this objective.
 
Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014.

IACC Recommended Budget: $11,100,000 over 5 years
3.7
$2,742,999
1 project

3.L.A
$3,740,812
2 projects

3.L.A
$2,971,093
2 projects

3.L.A
$2,864,377
1 project

3.L.A
$2,875,202
2 projects

$15,194,483
3.L.A. Funding: The recommended budget for this objective was met, but emphasis on this objective should continue in the future.

Progress: The Group is concerned about the lack of continued funding for EARLI. More positively, projects analyzing the previously collected EARLI data are in process. Also, the MARBLES project contributes toward the goal of studying  the interaction of genetic and environmental factors beginning during pregnancy, but, since it is not a multi-site study, and is also a continuation of an existing study funded as a pilot under a UC Davis Children's Center grant, funding for MARBLES is coded to 3.S.C, which overlaps somewhat with this objective.

Remaining Gaps, Needs, and Opportunities:   A barrier to this type of work is the extremely high cost of building the necessary infrastructure. With MARBLES and previously with EARLI, there has been some progress on infrastructure. It is important to maintain these cohorts where possible, to collect a wide range of samples, and to use them for multiple studies to capitalize on investments made.
 
Identify genetic risk factors in at least 50% of people with ASD by 2014.

IACC Recommended Budget: $33,900,000 over 6 years
3.8
$37,043,410
83 projects

3.L.B
$49,905,587
79 projects

3.L.B
$34,432,884
60 projects

3.L.B
$25,383,346
59 projects

3.L.B
$23,041,231
74 projects

$169,806,458
3.L.B. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress:  Further work is needed to identify genetic risk factors in at least 50% of people. Currently, whole exome analysis predicts that a genetic risk factor can be identified for 20% of people; inclusion of CNV data might push this toward 30%.

Remaining Gaps, Needs, and Opportunities: The initial budget recommendation for this objective was made based on the assumption that GWAS studies would provide risk factor identification, but sequencing has proven more fruitful. Since this technique is more expensive, a higher budget will be required to meet the goal of 50%.
 
Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the prenatal and early postnatal period of development by 2015.

IACC Recommended Budget: $25,100,000 over 7 years
3.6
$1,803,628
13 projects

3.L.C
$1,992,228
10 projects

3.L.C
$820,320
10 projects

3.L.C
$379,913
5 projects

3.L.C
$353,000
5 projects

$5,349,089
3.L.C. Funding: The recommended budget was partially met, and several projects were funded, but it appears there is a downward trend in funding for these projects over time. This objective partially overlaps with 3.L.A.

Progress: Epidemiological studies coded to other objectives (e.g., EARLI) may also represent progress in this area.

Remaining Gaps, Needs, and Opportunities:  A barrier to the completion of this objective is the undefined nature of ASD subtypes, both phenotypically and etiologically, lack of prenatal samples, and the lack of longitudinal follow-up of at-risk subgroups. This field is still developing and needs support.
 
Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including United States populations, to collect data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed) to analyze targets for potential gene/environment interactions by 2015.

IACC Recommended Budget: $44,400,000 over 5 years
3.9
$17,297,788
29 projects

3.L.D
$9,135,505
12 projects

3.L.D
$11,464,011
10 projects

3.L.D
$11,567,250
10 projects

3.L.D
$13,549,160
12 projects

$63,013,714
3.L.D. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: The funds allocated to this objective to date have been used for data collection and the development of infrastructure, with most of the studies coded to this area relating to CDC's CADDRE program.

Remaining Gaps, Needs, and Opportunities:  Continued funding will be needed to support data analysis. Both molecular and environmental data are needed.
 
Not specific to any objective (Core/Other Activities) 3.Core/ Other Activities
$6,791,008
52 projects

3.Core/ Other Activities
$8,512,980
39 projects

3.Core/ Other Activities
$1,312,450
7 projects

3.Core/ Other Activities
$724,770
5 projects

3.Core/ Other Activities
$315,607
3 projects

$17,656,815
Total funding for Question 3 $82,846,620
221 projects

$100,043,216
192 projects

$81,231,647
162 projects

$60,209,628 148 projects

$56,487,025
162 projects

$380,818,136

Table 3: Question 3 Cumulative Funding Table, see appendix for a color-coding key and further details.

Question 4 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Support at least three randomized controlled trials that address co-occurring medical conditions associated with ASD by 2010.

IACC Recommended Budget: $13,400,000 over 3 years
4.2
$4,583,171
5 projects

4.S.A
$4,733,841
6 projects

4.S.A
$3,787,700
4 projects

4.S.A
$1,826,542
4 projects

4.S.A
$2,174,124
3 projects

$17,105,378
4.S.A. Funding: The recommended budget for this objective was met.

Progress: More than three projects were funded, including trials of sleep, anxiety, seizure and gastrointestinal (GI) interventions, meeting the objective. Additional work will be needed in the future to fully address these conditions.

Remaining Gaps, Needs, and Opportunities: Sleep issues, anxiety, hyperactivity and GI issues are key co-occurring medical conditions in patients with ASD.   Although there is much more known today about sleep initiation than what was understood 5 years ago, there is little understanding of what interventions/treatments are effective for sleep maintenance or night awakening.  There is not much known concerning anxiety treatments for those with ASD, and challenges exist regarding the adaptation of anxiety treatments from outside ASD patient groups.  Research into interventions for hyperactivity may be transferred from populations outside of those with ASD (i.e., ADHD).  Though there has been an increased awareness of gastrointestinal difficulties and common symptoms among people with ASD, little is known about the etiology of autism-related GI issues.  More research on the etiology of GI issues will be needed to develop appropriate treatments/interventions.
 
Standardize and validate at least 20 model systems (e.g., cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions by 2012.

IACC Recommended Budget: $75,000,000 over 5 years
4.5
$15,879,827
42 projects

4.S.B
$20,162,709
70 projects

4.S.B
$23,229,501
92 projects

4.S.B
$21,606,118
89 projects

4.S.B
$21,232,514
94 projects

$102,110,669
4.S.B. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: More than 90 projects were supported to develop animal models.

Remaining Gaps, Needs, and Opportunities: Planning Group members discussed whether the amount of investment in this area is appropriate when compared to investments in clinical trials and other later stage studies. Invited experts suggested that the current stage of scientific research in ASD requires pre-clinical research to identify targets from animal and cellular models.  Similar to cancer treatment development pathways, which spanned 20-30 years, research in ASD must invest in model systems to understand the fundamental biology from which translation to the clinic can be built.   The translational validity of research in non-human animals cannot be determined until human trials are conducted, thus the need for rapid progress to clinical studies in humans is important.
 
Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, assisted technologies, sensory integration, medical procedures) that have not been rigorously studied for use in ASD by 2012.

IACC Recommended Budget: $27,800,000 over 5 years
4.6
$641,285
8 projects

4.S.C
$3,252,941
29 projects

4.S.C
$1,509,745
18 projects

4.S.C
$2,254,724
18 projects

4.S.C
$1,288,226
17 projects

$8,946,921
4.S.C. Funding: The recommended budget was partially met.

Progress: Several projects were funded in this area, but more work is needed, as this is an area of significant public interest.

Remaining Gaps, Needs, and Opportunities: Experts discussed the best balance between developing new treatments and testing current treatments that lack evidence, especially when funds are limited and conclusive clinical trials are expensive.  The group noted that interventions for minimally verbal children are needed; some projects on assistive communication technologies, robotics and speech processing technology to assist with social communication training are funded, but more are needed.  There are other projects related to minimally verbal autism in objective 4.S.G. Small pilot studies on nutritional therapies (i.e., GFCF diet studies) have been conducted with inconclusive outcomes, demonstrating the necessity for further exploration of nutritional interventions.  Future emphasis on scientific investment in sensory integration and assisted technologies is needed.
 
Complete two multi-site randomized controlled trials of comprehensive early intervention that address core symptoms, family functioning and community involvement by 2013.

IACC Recommended Budget: $16,700,000 over 5 years
4.7
$4,236,869
5 projects

4.S.D
$7,540,613
9 projects

4.S.D
$10,306,148
18 projects

4.S.D
$11,156,647
20 projects

4.S.D
$8,848,130
21 projects

$42,088,407
4.S.D. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: In 2011 and 2012, ~20 trials were supported, including a mix of trial sizes. 

Remaining Gaps, Needs, and Opportunities: There is a need for both small, pilot studies and larger, robustly powered studies in this area.  Several larger studies in the past few years (e.g., Early Start Denver Model) have emerged, but most studies in this area are generally smaller than in other fields of medicine and therefore lack the power to be informative if negative or definitive if positive.  This objective also cites "family functioning" and "community living," which may have significant overlap with objectives in Questions 5 and 6 of the Strategic Plan.
 
Convene a workshop to advance the understanding of clinical subtypes and treatment personalization (i.e., what are the core symptoms to target for treatment studies) by 2011.

IACC Recommended Budget: $50,000
* This objective was partially completed in 2011
N/A

4.S.E
$0
0 projects

4.S.E
$0
0 projects

4.S.E*
$26,000
1 project

4.S.E*
$0
0 projects

$26,000
4.S.E. Funding: The recommended budget was partially met, but was not put toward a single dedicated workshop.

Progress: Two workshops and other activities that have partially addressed this issue have taken place, but to date there has not been a dedicated workshop on this issue, so this objective is marked "yellow."

Remaining Gaps, Needs, and Opportunities: Autism Speaks held two relevant workshops. The first, that took place on January 2011, "Outcome Measures for Clinical Trials with Individuals with ASD: Challenges and Opportunities," was focused on developing strategies for advancing clinical trials of medications for ASD core and associated symptoms.  The second, "Translational Medicine Research in ASD: Challenges and Opportunities," that also took place in January 2011 focused on the basic science needed to discover and develop new treatments. Biomarkers and treatment personalization were among the topics discussed in both workshops.  The EU-AIMS public-private consortium in Europe is working toward "developing and validating translational approaches for the advancement of novel therapies to treat ASD."  Identification of biomarkers of subtypes of ASD and personalization of interventions are within the consortium's goals.  Joint meetings between EU-AIMS and the Foundation for NIH Biomarkers Consortium, another recently-formed consortium around biomarkers and personalized treatments, are ongoing to determine the opportunities for collaboration on identifying surrogate markers for ASD treatment studies.  Thus, while a dedicated workshop on clinical subtypes has not taken place, some of the present activities are discussing and implementing projects related to this topic. 
 
Launch randomized controlled trials of interventions including biological signatures and other measures to predict response, and monitor quality of life and functional outcomes in each of the following groups:
  • Five trials in infants and toddlers by 2013.

    IACC Recommended Budget: $30,000,000 over 5 years (revised in 2010)
  • Three trials in school-aged children and/or adolescents by 2013.

    IACC Recommended Budget: $18,000,000 over 5 years (revised in 2010)
  • Three trials in adults by 2014.

    IACC Recommended Budget: $18,000,000 over 5 years

Total IACC Recommended Budget: $66,000,000 over 5 years

4.3 & 4.4
$12,109,516
16 projects & 30 projects

4.S.F
$9,791,270
42 projects

4.S.F
$7,575,212
30 projects

4.S.F
$5,445,599
23 projects


4.S.F
$6,255,438
21 projects


$41,177,035
4.S.F. Funding: The recommended budget was partially met.

Progress: The investment in projects under this objective is making good progress toward the recommended amount, with more than 20 projects funded in 2011 and 2012.

Remaining Gaps, Needs, and Opportunities: Current projects in this area are restricted to small pilot studies, which are essential to establishing a foundation prior to expansion to larger scale work.  Thus, increased investment in this area is important.   It should be noted that most RCTs in the future will incorporate some aspect of biological signatures (thus potentially presenting a challenge to future coding of projects).
 
Support at least five studies on interventions for nonverbal individuals with ASD by 2012. Such studies may include:
  • Projects examining service-provision models that enhance access to augmentative and alternative communication (AAC) supports in both classroom and adult service-provision settings, such as residential service-provision and the impact of such access on quality of life, communication, and behavior;
  • Studies of novel treatment approaches that facilitate communication skills in individuals who are nonverbal, including the components of effective AAC approaches for specific subpopulations of people with ASD; and
  • Studies assessing access and use of AAC for children and adults with ASD who have limited or partially limited speech and the impact on functional outcomes and quality of life.
IACC Recommended Budget: $3,000,000 over 2 years
N/A

N/A

4.S.G
$1,907,721
11 projects

4.S.G
$2,830,851
13 projects

4.S.G
$4,841,831
16 projects

$9,580,403
4.S.G. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: Between 11 and 16 studies were funded annually in the years 2010-2012, but results will not be available for at least two years.

Remaining Gaps, Needs, and Opportunities: The field of research on non-verbal patients with ASD is growing, yet still requires significant work and future investment.  ASD research has historically concentrated on verbal individuals and adults, which highlights the need for increased research on minimally verbal populations.
 
Support at least two studies that focus on research on health promotion and prevention of secondary conditions in people with ASD by 2012. Secondary conditions of interest include weight issues and obesity, injury, and co-occurring psychiatric and medical conditions.

IACC Recommended Budget: $5,000,000 over 3 years
N/A

N/A

4.S.H
$225,877
2 projects

4.S.H
$222,265
1 project

4.S.H
$956,827
4 projects

$1,404,969
4.S.H. Funding: The recommended budget was partially met.

Progress: A small number of projects, but more than the recommended minimum, were funded, but further work is needed to address some of the specific issues described in the objective.

Remaining Gaps, Needs, and Opportunities: Overlap in interpretation between "co-occurring" and "secondary" conditions presents a challenge in evaluating this objective.  There is likely overlap between projects that may fit this objective and those in 4.S.A.  Areas of health promotion and disease prevention should be emphasized in this objective, as those are distinct from issues mentioned in other objectives in this Question.  It was noted that 4.S.H's emphasis on prevention and health promotion may also overlap with 5.S.D and 5.L.D on "health and safety and mortality" issues.
 
Complete at least three randomized controlled trials on medications targeting core symptoms in people with ASD of all ages by 2014.

IACC Recommended Budget: $22,200,000 over 5 years
4.8
$1,380,376
12 projects

4.L.A
$1,168,146
10 projects

4.L.A
$1,924,932
11 projects

4.L.A
$1,527,858
12 projects

4.L.A
$3,713,783
14 projects

$9,715,095
4.L.A. Funding: The recommended budget was partially met.

Progress: 10-14 studies have been funded, which is more than the minimum recommended, and momentum within the pre-clinical phases of this objective is currently building. It should be noted, however, in that many of these studies are small trials or pilot studies. 

Remaining Gaps, Needs, and Opportunities: Though there is little evidence that CNS drug development in animals will translate to humans, either in terms of toxicity or efficacy, there is still a need for investment in well-established animal model studies to identify promising molecular, cellular, or systems targets before mounting randomized clinical trials in humans. However, existing drugs for other indications may be adapted to ASD without extensive pre-clinical work, and there is also evidence for proof of concept studies for ASD (particularly those addressing core symptoms).  It is also critically important to develop appropriate outcome measures for use in trials.
 
Develop interventions for siblings of people with ASD with the goal of reducing the risk of recurrence by at least 30% by 2014.

IACC Recommended Budget: $6,700,000 over 5 years
4.9
$14,256
1 project

4.L.B
$132,263
2 projects

4.L.B
$307,349
3 projects

4.L.B
$14,256
2 projects

4.L.B
$362,987
2 projects

$831,111
4.L.B. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: Only a small number of projects has been funded, and the intent of the objective has not been met to date. Research on siblings is still at an early stage, and the results, just beginning to be published, will inform future progress.

Remaining Gaps, Needs, and Opportunities:  Results from studies within this objective will emerge in the near future.  Greater understanding of the mechanisms underlying sibling development of ASD will be key before any targeted early interventions may be developed for this population.
 
Conduct at least one study to evaluate the safety and effectiveness of medications commonly used in the treatment of co-occurring conditions or specific behavioral issues in people with ASD by 2015.

IACC Recommended Budget: $10,000,000 over 5 years
N/A

4.L.C
$1,061,222
7 projects

4.L.C
$2,302,240
7 projects

4.L.C
$2,834,887
8 projects

4.L.C
$277,072
3 projects

$6,475,421
4.L.C. Funding: The recommended budget was partially met. 

Progress: A small number (3-7) of studies of pharmacological interventions for co-occurring conditions was funded. There exist many studies examining drugs that are in active use for ADHD that are now being adapted to ADHD-ASD patient groups.

Remaining Gaps, Needs, and Opportunities: There currently is much need for greater understanding of drug efficacy in ASD populations.
 
Support at least five community-based studies that assess the effectiveness of interventions and services in broader community settings by 2015. Such studies may include comparative effectiveness research studies that assess the relative effectiveness of:
  • Different and/or combined medical, pharmacological, nutritional, behavioral, service-provision, and parent- or caregiver-implemented treatments;
  • Scalable early intervention programs for implementation in underserved, low-resource, and low-literacy populations; and
  • Studies of widely used community intervention models for which extensive published data are not available.
Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes.

IACC Recommended Budget: $37,500,000 over 5 years
N/A

N/A

4.L.D
$8,756,832
32 projects

4.L.D
$6,296,024
32 projects

4.L.D
$10,186,313
45 projects

$25,239,169
4.L.D. Funding: The recommended budget was partially met, and the annualized recommended budget targets were met for all 3 years since the objective was introduced.  Therefore, the funding for this objective is on track.

Progress: 30-45 studies have been supported, which is greater than the recommended minimum of at least five studies.  Considerable work has been done under this objective, but these projects do not cover the full scope of interventions in the community. Comparing the large number of studies to the funding suggests that many small studies are being funded rather than fewer large ones.

Remaining Gaps, Needs, and Opportunities: Emphasis on both the evaluation of interventions in controlled/academic settings prior to community based studies and the translation of interventions to community-based settings is key.  Understanding of "Type 2 Translation," or transfer of research from academic settings to real-world settings is important, considering barriers to transferring academic-based interventions to clinical groups and communities. Investment is still necessary in the academic setting before successful translation to community-based interventions can occur.  For successful T2 translation to underserved communities, cost effectiveness and case coordination or case management is often helpful with uptake.  This objective also overlaps considerably with objectives in Question 5.  It is important to explore which supports are specifically executed at the community level (vs. home, schools, etc.), and to determine how they are best designed.
 
Not specific to any objective (Core/Other Activities) 4.Core/Other Activities
$14,075,905
54 projects

4.Core/Other Activities
$15,560,011
59 projects

4.Core/Other Activities
$6,290,633
49 projects

4.Core/Other Activities
$4,777,350
37 projects

4.Core/Other Activities
$3,862,655
29 projects

$44,566,554
Total funding for Question 4 $53,968,973
178 projects

$63,403,014
234 projects

$68,123,890
277 projects

$60,819,121
260 projects

$63,999,900
269 projects

$309,267,132*

Table 4: Question 4 Cumulative Funding Table, see appendix for a color-coding key and further details.

* This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for the years 2008, 2009, and 2010 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

Question 5 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Support two studies that assess how variations in and access to services affect family functioning in diverse populations, including underserved populations, by 2012.

IACC Recommended Budget: $1,000,000 over 3 years
5.2
$0
0 projects

5.S.A
$499,999
1 project

5.S.A
$2,061,834
9 projects

5.S.A
$1,351,793
8 projects

5.S.A
$1,364,087
6 projects

$5,277,713
5.S.A. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: The initial target of two studies was met, with 1-9 projects supported per year, but more work is still needed in this area.

Remaining gaps, needs and opportunities: The projects under this objective cover several topics related to family functioning and health disparities, but not the full breadth of the gaps mentioned in the objective. This objective, as written, may be too broad. Work is still needed to understand why underserved populations have poorer outcomes and what can be done to close the gaps. We need to understand what portfolio of services will result in the best outcomes for different populations. To address these questions, a qualitative approach (i.e., needs assessment or survey) may be needed to understand the context of barriers faced by different groups. Research on disparities needs to move beyond observational studies to experimental designs to see what approaches work best in different populations and settings.
 
Conduct one study to examine how self-directed community-based services and supports impact children, youth, and adults with ASD across the spectrum by 2014.

IACC Recommended Budget: $6,000,000 over 3 years
N/A

5.S.B
$446,340
6 projects

5.S.B
$291,635
6 projects

5.S.B
$0
1 project

5.S.B
$0
0 projects

$737,975
5.S.B. Funding: The recommended budget was partially met.

Progress: More work is needed in this area to achieve the goals set forth by the objective. While more than the number of studies called for have been supported, the area is underfunded (the projects have been small) and the projects do not examine all areas targeted in the objective.

Remaining gaps, needs and opportunities: Several of the funded projects relate to recreational activities, but more projects that focus on issues such as housing, employment, and quality of life (self-direction) are needed. Issues such as housing and employment may not be reflected in the portfolio data because the agencies and organizations included in the analysis may not have these topics as a primary focus, and many housing and employment-related efforts may not be specific to ASD. This area may benefit from a "practice to research" approach where already-operating programs can be evaluated for efficacy and this may help to develop more easily implementable services. Work is also needed to determine what outcome measures are informative and useful. Another issue is the scalability, as many vocational projects are very small and intensive and this is not an effective model for broad implementation. Potential funding mechanisms for these evaluations include the Dept. of Education Institute of Educational Science program for partnering researchers and educators and the NIMH Research Initiative for Scientific Enhancement (RISE) R25 program.
 
Implement and evaluate five models of policy and practice-level coordination among State and local agencies to provide integrated and comprehensive community-based supports and services that enhance access to services and supports, self-determination, economic self-sufficiency, and quality of life for people with ASD across the spectrum and their families, (which may include access to augmentative and alternative communication [AAC] technology), with at least one project aimed at the needs of transitioning youth and at least one study to evaluate a model of policy and practice-level coordination among State and local mental health agencies serving people with ASD, by 2015.

IACC Recommended Budget: $25,000,000 over 5 years (revised in 2011)
N/A

5.S.C
$0
0 projects

5.S.C
$4,225,315
15 projects

5.S.C
$600,000
3 projects

5.S.C
$600,000
2 projects

$5,425,315
5.S.C. Funding: The recommended budget was partially met.

Progress: Progress has been made but the objective is not fully achieved, as it is underfunded and the projects do not cover all of the issues mentioned in the objective.

Remaining gaps, needs and opportunities: Studying services coordination is very difficult and it is hard to define outcomes. State to state dissemination is very limited and fragmented. Also, state policies often are translated to practice very differently in different areas and counties. State and local services programs also suffer from a lack of knowledge in how to engage and sustain community and partnerships. A pairing of existing state and local services programs(including those that may be participating in federally-funded state demonstration programs) with research funding for evaluation would be the most cost-effective way to collect and analyze data about the implementation of models of coordination. For example, building research projects onto existing state demonstration programs and supporting the development of partnerships between academic researchers and state agencies to study models of policy implementation would be ways to advance this type of research.
 
Support two studies to examine health, safety, and mortality issues for people with ASD by 2012.

IACC Recommended Budget: $4,500,000 over 3 years
N/A

N/A

5.S.D
$159,135
3 projects

5.S.D
$0
1 project

5.S.D
$5,000
1 project

$164,135
5.S.D. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: More work is needed on this objective; studies have been funded in this area (e.g., wandering, victimization), but they are small and they do not address all issues within this objective.

Remaining gaps, needs and opportunities: There may be some projects in other Strategic Plan Questions that are related to this objective (i.e., the Utah epidemiological study This link exits the Interagency Autism Coordinating Committee Web site coded to Question 7 that examines health risks and causes of mortality). There is ongoing data mining of existing data sets to identify risks, new methods of prevention, methods of recovery, and best practices. Best practices need to be developed to respond to wandering (prevention, response, and search). A "practice to research" model, where data are collected in the process of delivering services, would also be appropriate. One issue that is underrepresented in the portfolio is sexual/reproductive health communication for adolescents and adults with ASD. In general, adult needs are not well-represented in the current research.
 
Test four methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings by 2013.

IACC Recommended Budget: $7,000,000 over 5 years
5.4
$125,838
2 projects

5.L.A
$5,460,809
10 projects

5.L.A
$7,747,912
22 projects

5.L.A
$5,840,814
24 projects

5.L.A
$7,210,677
32 projects

$26,386,050
5.L.A. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: This is a very broad objective, and a lot of research is being supported in this area. More work is needed, however, to cover the range of topics addressed in the objective.

Remaining gaps, needs and opportunities: Specifically, the requirement of projects looking at diverse community settings has not been met. Most of the projects listed are not focused on dissemination or may be using a model that is not well-translated to autism. Dissemination should be part of a grant application and this should be rigorously enforced. An opportunity in this area would be to create and support training institutes within existing networks that are focused on implementation and dissemination.
 
Test the efficacy and cost-effectiveness of at least four evidence-based services and supports for people with ASD across the spectrum and of all ages living in community settings by 2015.

IACC Recommended Budget: $16,700,000 over 5 years
5.3
$0
0 projects

5.L.B
$103,722
5 projects

5.L.B
$0
0 projects

5.L.B
$0
0 projects

5.L.B
$499,995
1 project

$603,717
5.L.B. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: There are ongoing projects under this objective with regard to efficacy but not cost-effectiveness. More work is needed and in general, the intention of this objective has not been achieved.

Remaining gaps, needs and opportunities: Cost-effectiveness evaluations have to be paired with randomized controlled trials (RCTs). Efforts should be made to build onto existing efforts by adding cost-effectiveness evaluation to existing RCTs. Administrative supplements may help to achieve those additions. There are not well established autism-specific measures of cost-effectiveness. Some barriers to achieving this objective include the need for a long follow up period, which often is not possible due to the cost of running longer term trials. Also, these projects often do not receive favorable scores during grant review because review favors tightly controlled experimental designs rather than experimentation in real-world conditions.  
 
Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers, to benefit the spectrum of people with ASD and to promote interdisciplinary practice by 2015.

IACC Recommended Budget: $8,000,000 over 5 years
N/A

5.L.C
$132,494
6 projects

5.L.C
$36,433,257
83 projects

5.L.C
$6,048,734
30 projects

5.L.C
$3,724,262
29 projects

$46,338,747
5.L.C. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: Many projects have been funded in this area. However, there is an ongoing need for support of efforts in this area.

Remaining gaps, needs and opportunities: Significant workforce needs remain, especially with regard to paraprofessionals. With all studies in this objective, there remains an issue of scale. Most training programs are designed for small groups. In order for training to be effective at the community level, it has to be able to scale up for broad dissemination, so training programs need to be evaluated for their potential to be scaled up. Comparative effectiveness studies of training models are needed to illuminate whether or not providers need more training, which populations require which training methods, and which training methods are most effective.
 
Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015.

IACC Recommended Budget: $2,000,000 over 2 years
N/A

N/A

5.L.D
$296,840
5 projects

5.L.D
$279,999
4 projects

5.L.D
$54,999
3 projects

$631,838
5.L.D. Funding: The recommended budget was small yet was partially met.

Progress: Though more than the two studies recommended as a minimum have been funded in this area, more work is needed. This objective overlaps significantly with 5.S.D and also with 4.S.H. In the future, perhaps these objectives should be collapsed and combined.

Remaining gaps, needs and opportunities: Obesity is an important issue related to this objective that is not in the portfolio, but should also be a focus.
 
Support three studies of dental health issues for people with ASD by 2015. This should include:
  • One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment.
  • One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD.
  • One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice.
IACC Recommended Budget: $900,000 over 3 years for each sub-objective ($2,700,000 total)
N/A

N/A

5.L.E
$196,457
2 projects

5.L.E
$443,860
3 projects

5.L.E
$307,784
2 projects

$948,101
5.L.E. Funding: The recommended budget was partially met.

Progress: While several important projects have been funded in this area, there is a gap in projects that focus on dental services for adults and training for dentists working with autistic adults.

Remaining gaps, needs and opportunities: While the funded studies focus on behavior management, a more comprehensive health focus is needed to address the dental needs of children and adults with ASD. This objective is very specific, but there are other important primary health care needs for people with ASD that need to be addressed. In the future, perhaps this topic could be collapsed under a broader general objective that addresses primary health care needs (combined with 5.S.D, 5.L.D). If a new objective were to be written, other important primary care issues such as mental health services should be included.
 
Not specific to any objective (Core/Other Activities) 5.Core/Other Activities
$1,247,714
5 projects

5.Core/Other Activities
$2,004,687
8 projects

5.Core/Other
Activities
$13,436,737
66 projects

5.Core/Other
Activities
$11,553,704
63 projects

5.Core/Other
Activities
$9,060,297
62 projects

$37,303,139
Total funding for Question 5 $1,685,222
13 projects

$8,648,050
36 projects

$64,849,122
211 projects

$26,118,904 137 projects

$22,827,101 138 projects

$123,816,730*

Table 5: Question 5 Cumulative Funding Table, see appendix for a color-coding key and further details.

* This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for the years 2008, 2009, and 2010 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

Question 6 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Launch at least two studies to assess and characterize variation in the quality of life for adults on the ASD spectrum as it relates to characteristics of the service delivery system (e.g., safety, integrated employment, post-secondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) and determine best practices by 2012.

IACC Recommended Budget: $5,000,000 over 3 years
6.2
$0
0 projects

6.S.A
$20,000
1 project

6.S.A
$283,837
2 projects

6.S.A
$542,193
6 projects

6.S.A
$1,013,156
10 projects

$1,859,186
6.S.A. Funding: The recommended budget was partially met.

Progress: More than two projects have been funded in this area, though the end goal of determining best practices has not yet been met. Still, this area is moving in the right direction as funding and projects have increased over time.

Remaining gaps, needs and opportunities: There is a great need to develop standardized measures for quality of life for people with ASD, across both range of ability and lifespan.
 
Evaluate at least one model, at the State and local level, in which existing programs to assist people with disabilities (e.g., Social Security Administration, Rehabilitation Services Administration) meet the needs of transitioning youth and adults with ASD by 2013.

IACC Recommended Budget: $5,000,000 over 3 years
N/A

6.S.B
$0
0 projects

6.S.B
$700,000
2 projects

6.S.B
$700,000
2 projects

6.S.B
$700,000
2 projects

$2,100,000
6.S.B. Funding: The recommended budget was partially met.

Progress: More than one project was funded, meeting the initial target of this objective.

Remaining gaps, needs and opportunities: Current projects relate to vocational rehabilitation, as called for in the objective, but no projects address Social Security programs, which remain a need. Also, looking at one model is too limited in scope, and stronger partnerships among programs would be beneficial for this objective. In the future, perhaps this objective could be expanded to include more projects and/or funding to examine other models.
 
Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, and track outcomes with consideration of ethical issues (insurance, employment, stigma) by 2015.

IACC Recommended Budget: $8,400,000 over 5 years
N/A

6.S.C
$0
0 projects

6.S.C
$28,000
1 project

6.S.C
$28,000
1 project

6.S.C
$0
1 project

$56,000
6.S.C. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: The objective called for a minimum of one project, and one small project to adapt the ADOS modules 1 and 2 for use in adults has been supported in this area, but most likely multiple projects testing various approaches, followed by intense efforts to refine the instruments, would be needed to develop a set of tools that could be used in different settings to diagnose adults.

Remaining gaps, needs and opportunities: In addition to developing tools that can be used for diagnosis in adults, it is critical to ensure that diagnosis links to a plan for intervention and /or service provision for diagnosed adults, resulting in improved outcomes.
 
Conduct at least one study to measure and improve the quality of lifelong supports being delivered in community settings to adults across the spectrum with ASD through provision of specialized training for direct care staff, parents, and legal guardians, including assessment and development of ASD-specific training, if necessary, by 2015.

IACC Recommended Budget: $7,500,000 over 3 years
N/A

6.S.D
$0
0 projects

6.S.D
$619,163
3 projects

6.S.D
$0
2 projects

6.S.D
$0
1 project

$619,163
6.S.D. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: While more than one project has been funded, and the objective called for one project at minimum, the current funding and projects for this objective are not likely to meet the intent of the objective. Also, the few projects funded do not address the full range of issues mentioned in this objective.

Remaining gaps, needs and opportunities: The projects under this objective focus on secondary students and transition age youth  and there are no projects focusing on older adults. No new projects were funded in 2011 and 2012, though the goals of this objective are similar/overlapping to those of 5.L.C, and projects coded there may also represent progress on this objective. There is a need for effective training for healthcare staff and guardians that can be delivered cost-effectively on a large scale.
 
Develop at least two individualized community-based interventions that improve quality-of-life or health outcomes for the spectrum of adults with ASD by 2015.

IACC Recommended Budget: $12,900,000 over 5 years
6.5
$2,471,000
1 project

6.L.A
$509,965
2 projects

6.L.A
$2,285,071
18 projects

6.L.A
$2,154,170
15 projects

6.L.A
$616,119
11 projects

$8,036,325
6.L.A. Funding: The recommended budget was partially met.

Progress: Between 11 and 18 projects were supported each year between 2010 and 2012. Progress is being made; however, a sustained effort is needed to fully achieve the goals set forth by this objective. Funding for projects specific to this objective was substantially lower in 2012 than previous years, which is a concern.

Remaining gaps, needs and opportunities: Work focused on adults with ASD lags behind that focused on children and adolescents. This objective is similar to 6.S.A – it might be helpful to separate the outcomes of interest to better assess progress. Also, quality of life outcome measures are needed to know if interventions are working.
 
Conduct one study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015.

IACC Recommended Budget: $5,000,000 over 5 years
N/A

6.L.B
$718,290
2 projects

6.L.B
$1,280,790
3 projects

6.L.B
$1,348,557
4 projects

6.L.B
$639,346
2 projects

$3,986,983
6.L.B. Funding: The recommended budget was partially met.

Progress: More than the minimum of one recommended project was funded. However, the projects have not answered all of the questions regarding long-term outcomes of interventions, services and supports received during childhood and more research is needed in this area.

Remaining gaps, needs and opportunities: More than one study would be useful for this objective, including a focus on the benefits of early intervention. The barrier of the high cost of conducting these types of studies could be mitigated by capitalizing on partnerships between groups and on existing infrastructure.
 
Conduct comparative effectiveness research that includes a cost-effectiveness component to examine community-based interventions, services, and supports to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2018. Topics should include:
  • Community housing for people with ASD;
  • Successful life transitions for people with ASD, including from post-secondary education to adult services, employment, sibling relationships, and day programs; and
  • Meeting the service and support needs of older adults with ASD.
IACC Recommended Budget: $6,000,000 over 5 years
N/A

6.L.C
$0
0 projects

6.L.C
$774,644
2 projects

6.L.C
$0
0 projects

6.L.C
$0
0 projects

$774,644
6.L.C. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: Not nearly enough funding and projects have been devoted to this objective much more work needs to be done.

Remaining gaps, needs and opportunities: Projects regarding service and support needs of older adults are needed; however, there is a question about whether there are yet enough empirically sound adult interventions to make it possible to do comparative effectiveness studies . It could be useful to separate out specific populations, topics (housing, transitions, etc.) or outcomes in order to better assess progress. A characterization of current resources and how well they're working is needed for this objective, which is the goal of the newly released report from The State of the States project. The current focus of the field on the transition to adulthood should be expanded to include the full lifespan.
 
Conduct implementation research to test the results from comparative effectiveness research in real-world settings, including a cost-effectiveness component to improve health outcomes and quality of life for adults over 21 on the ASD spectrum by 2023.

IACC Recommended Budget: $4,000,000 over 5 years
N/A

6.L.D
$0
0 projects

6.L.D
$0
0 projects

6.L.D
$75,000
2 projects

6.L.D
$60,000
3 projects

$135,000
6.L.D. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: There is an inadequate amount of projects and funding for this objective. The funded studies are economic analyses,  but there is a lack of comparative effectiveness research in adults that is ready to be tested in real-world settings, and thus, there are no projects that move to this next level.

Remaining gaps, needs and opportunities: There is a huge gap in adult prevalence research, and in identifying relevant real-world settings for adults with ASD. Identifying the needs of adults with ASD remains important (a needs assessment is needed), and research involving ASD subjects beyond the age of 18 is both lacking and vital.
 
Not specific to any objective (Core/Other Activities) 6.Core/Other Activities
$467,683
2 projects

6.Core/Other Activities
$159,444
2 projects

6.Core/Other Activities
$671,619
3 projects

6.Core/Other Activities
$50,000
3 projects

6.Core/Other Activities
$830,556
4 projects

$2,179,302
Total funding for Question 6 $9,796,491
9 projects

$1,407,699
7 projects

$6,643,124
34 projects

$4,897,920
35 projects

$3,859,177
34 projects

$19,746,603*

Table 6: Question 6 Cumulative Funding Table, see appendix for a color-coding key and further details.

* This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for the years 2008, 2009, and 2010 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

Question 7 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Conduct a needs assessment to determine how to merge or link administrative and/or surveillance databases that allow for tracking the involvement of people living with ASD in health care, education, and social services by 2009.

IACC Recommended Budget: $520,000 over 1 year
6.4
$0
0 projects

7.A
$0
0 projects

7.A
$0
0 projects

7.A
$0
0 projects

7.A
$0
0 projects

$0
7.A. Funding: There has been no specific funding for projects addressing this objective.

Progress: The Planning Group is not aware of any efforts (projects or funding) that have been made to address this objective since it was created.

Remaining Gaps, Needs and Opportunities: A needs assessment remains necessary due to issues surrounding patient privacy in linked databases and also to determine how tracking the involvement of people with ASD in health care, education, and social services is possible with existing tools and resources. It remains to be decided whether this should be a government-led effort or a public/private partnership. Such resources could be utilized by both the research and services provision communities.
 
Conduct an annual "State of the States" assessment of existing State programs and supports for people and families living with ASD by 2011.

IACC Recommended Budget: $300,000 each year (revised in 2010)
5.1
$311,670
6 projects

7.B
$7,061
1 project

7.B
$197,128
1 project

7.B
$88,154
1 project

7.B
$0
1 project

$604,013
7.B. Funding: The recommended budget was partially met.

Progress: Centers for Medicare & Medicaid Services (CMS) conducted a "State of the States" project and released a report summarizing the results of the study in 2014. The book Autism Services Across America This link exits the Interagency Autism Coordinating Committee Web site by Dr. Peter Doehring also reviews existing programs and services across the states.

Remaining Gaps, Needs, and Opportunities: The initial State of the States study, overseen by CMS, was completed and published in 2014, but the objective calls for an annual study.  Since the first study required multiple years to complete and since it is not clear if services will change enough yearly to warrant an annual study, this objective should be revisited with CMS to understand whether an annual study is the best approach.
 
Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010.

IACC Recommended Budget: $1,300,000 over 2 years
6.1
$6,767,808
4 projects

7.C
$1,665,180
2 projects

7.C
$2,785,368
5 projects

7.C
$1,387,146
7 projects

7.C
$985,158
6 projects

$13,590,660
7.C. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: IAN and Group Health Cooperative Autism Registry are two examples of projects that are responsive to this objective. This objective should be considered to be met, with funding exceeding the recommended budget and a large number of diverse projects addressing this issue. NDAR, IAN and AGRE are all publicly available databases.

Remaining Gaps, Needs and Opportunities:  To advance this objective we need to encourage patients and families to join the registry. Compared to registry numbers for cystic fibrosis (100%), autism is behind at ~4% of patients enrolled in a registry. A table of the numbers of registrants by year would be an informative figure. We need more organized systems to improve participation.
 
Establish and maintain an international network of biobanks for the collection of brain tissue, fibroblasts for pluripotent stem cells, and other tissue or biological material, by acquisition sites that use standardized protocols for phenotyping, collection, and regulated distribution of limited samples by 2011.
  • This includes support for post-processing of tissue, such as genotyping, RNA expression profiling, and MRI.
  • Protocols should be put into place to expand the capacities of ongoing large-scale children's studies to collect and store additional biomaterials, including newborn bloodspots, promoting detection of biological signatures.
  • Support should also be provided to develop an international web-based digital brain atlas that would provide high-resolution 3-D images and quantitative anatomical data from tissue of patients with ASD and disease controls across the lifespan, which could serve as an online resource for quantitative morphological studies, by 2014.
IACC Recommended Budget: $82,700,000 over 5 years (revised in 2011)
2.1 & 2.6
$5,018,579
1 project &
1 project

7.D
$436,815
2 projects

7.D
$7,814,918
6 projects

7.D
$8,531,425
6 projects

7.D
$2,950,550
5 projects

$24,752,287
7.D. Funding: The recommended budget was partially met. In terms of autism-specific projects, $24.7 million has been spent to date.  Including non-autism-specific projects called for in the objective (i.e., the brain atlas), $59.6 million  has been spent to date.

Progress: NIH launched a new multi-disorder Neurobiobank initiative in 2013. The $5 million effort encompasses autism and other brain disorders, and is not included in the 2008-2012 projects examined by the committee for this update because it began in 2013. A private effort, the Autism BrainNet, is also underway, with several collection/storage/distribution sites governed by a scientific board which distributes samples based on scientific merit of proposed projects to use the tissue. Though these two efforts represent progress, more work is needed to increase the amount of tissues available and to ensure good stewardship of these resources. The BrainSpan Atlas, This link exits the Interagency Autism Coordinating Committee Web site supported by the Allen Brain Institute and a consortium of government and private funders, was completed and launched in 2011 and provides a powerful new resource for data on gene expression in the brain during development, but the project is not reflected in the 2008-2012 funding figures because it is not autism specific. In 2009, NIH supported the atlas with $18.4 million dollars and in 2010, NIH provided $16.5 million. The NIMH Repository and Genomics Resource This link exits the Interagency Autism Coordinating Committee Web site is another resource that has continued to grow to meet the needs of researchers in many fields, including ASD research.  Current sample numbers in the repository are: 28,300 DNA samples, with 15,700 samples that have been processed and prepared for distribution and 6,300 cases of autism represented. There are 21 fibroblast lines and 25 induced pluripotent stem cell lines.

Remaining Gaps, Needs and Opportunities: While progress has been made in establishing, maintaining and expanding tissue resources for research, this is still an area of enormous need. Currently there may be fewer brain samples available for study  than there were at the inception of the Strategic Plan due to the failure of a freezer at a major brain bank in 2012, which resulted in the loss of a large number of ASD brain specimens. There is also still a need for tissue and brains from neurotypical controls. Compared to other disorders, the number of tissue samples available for ASD research is quite low.
 
Begin development of a web-based toolbox to assist researchers in effectively and responsibly disseminating their findings to the community, including people with ASD, their families, and health practitioners by 2011.

IACC Recommended Budget: $400,000 over 2 years
N/A

7.E
$330,662
2 projects

7.E
$390,134
1 project

7.E
$533,354
1 project

7.E
$0
1 project

$1,254,150
7.E. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: The goal of  objective has been achieved in terms of efforts to help researchers more effectively disseminate their findings to the community online and in lay-friendly formats, but not through a web-based toolbox. For example, several agencies, organizations and groups (CDC, NIH, Simons Foundation, Autism Speaks, ASF, IAN) publish lay-friendly summaries of recent scientific findings online, as well as lay-friendly versions of their reports. In addition, the "Data from Papers" feature in NDAR connects readers from the Pubmed citation of a study to the actual data deposited in the database.

Remaining Gaps, Needs and Opportunities: Though agencies and organizations are making active efforts to assist researchers with disseminating findings to the community via the web, access to information about research findings remains limited for those communities that are resource-poor and do not have internet access. In addition, the lack of open access to most peer-reviewed journals limits the public's ability to access fully detailed information about new findings.
 
Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011.

No recommended budget assigned by the IACC
N/A

7.F
$0
0 projects

7.F
$0
0 projects

7.F
$0
0 projects

7.F
$0
0 projects

$0
7.F. Funding: There has been no specific funding for this objective.

Progress: There are no projects categorized to this objective. The Planning Group discussed the issue that creation of funding mechanisms is not likely to be achieved through grant funding, and therefore would not be reflected in the grant portfolio.

Remaining Gaps, Needs and Opportunities: The Committee still feels that this objective is relevant and that it is not too early to begin replication studies. In the databases there are 70,000 subjects, 7,000 exomes and 2,500 MRIs that can be used for replication analysis. The intent of the objective was to quickly replicate findings related to potential treatments, but to date, no special fast-track funding mechanisms have been established to support this.
 
Develop a web-based tool that provides population estimates of ASD prevalence for States based on the most recent prevalence range and average identified by the ADDM Network by 2012.

IACC Recommended Budget: $200,000 over 2 years
N/A

7.G
$0
0 projects

7.G
$0
0 projects

7.G
$0
0 projects

7.G
$0
0 projects

$0
7.G. Funding: Autism tracking data is captured in CDC's environmental tracking tool, which became available to the public in 2012, and is not reflected in the autism grant portfolio figure because it is a general tool that encompasses multiple disorders and conditions.

Progress: The intent of this objective has been accomplished through the CDC project and can be considered completed.

Remaining Gaps, Needs and Opportunities: No new needs or opportunities in this area were identified.
 
Create mechanisms to specifically support the contribution of data from 90% of newly initiated projects to the National Database for Autism Research (NDAR), and link NDAR with other existing data resources by 2012.

IACC Recommended Budget: $6,800,000 over 2 years
N/A

7.H
$1,932,996
2 projects

7.H
$2,453,253
3 projects

7.H
$1,517,596
1 project

7.H
$3,679,808
5 projects

$9,583,653
7.H. Funding: The recommended budget for this objective was met.

Progress: The objective to create mechanisms to support the contribution of data from newly initiated projects to NDAR has been met, and NDAR has linked with several other existing data sources such as the ATP, AGRE and IAN. In 2012, 81% of NIH-funded extramural studies were contributing data to NDAR. All NIH grants have terms that require linking of data to NDAR.

Remaining Gaps, Needs and Opportunities: Infrastructure will need continued development to enable greater availability of standardized data and analytical tools for cloud computing. IAN data collection could be expanded to include locations of residence to enable geographic data collection on environmental exposures.

 
Supplement existing ADDM Network sites to use population-based surveillance data to conduct at least five hypothesis-driven analyses evaluating factors that may contribute to changes in ASD prevalence by 2012.

IACC Recommended Budget: $660,000 over 2 years
N/A

7.I
$6,715,815
15 projects

7.I
$6,137,128
13 projects

7.I
$4,928,453
13 projects

7.I
$6,028,878
13 projects

$23,810,274
7.I. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective. (Note that the funding amount for this objective reflects the full funding of the ADDM sites and not just the supplements.)

Progress: The research goals in the objective have been achieved. Initially, supplements were needed to support these analyses, but now the ADDM sites are well established and are conducting some analyses using funds from the ADDM grants themselves, while outside supplements are supporting other additional analyses.

Remaining Gaps, Needs and Opportunities: Supplements remain an opportunity to capitalize on this infrastructure.
 
Develop the personnel and technical infrastructure to assist States, territories, and other countries that request assistance describing and investigating potential changes in the prevalence of ASD and other developmental disabilities by 2013.

IACC Recommended Budget: $1,650,000 over 3 years
N/A

7.J
$494,449
11 projects

7.J
$170,490
4 projects

7.J
$545,414
6 projects

7.J
$159,610
4 projects

$1,369,963
7.J. Funding: The recommended budget was met. In addition, the Autism Speaks Global Health Initiative projects address this objective, though they have been coded to their specific scientific areas and are not represented in this funding amount. Also, the CDC provides personnel and help to States, territories and countries as requested, but the budget for that assistance is not reflected in the portfolio analysis figures because this work is not done through grants.

Progress: Progress has been made in addressing this need, but not all responsive projects were reflected in the funding amount because some of them were conducted through sources not captured in the portfolio analysis (non-autism specific funding sources) or the projects were assigned according to their scientific topics rather than to this objective. In addition to providing supplemental funding for ADDM site surveillance, Autism Speaks funds projects on surveillance conducted by sites outside of the ADDM network, such as the Kwa-Zulu-Natal Autism Study in South Africa.

Remaining Gaps, Needs and Opportunities:  While progress has been achieved, ongoing efforts are needed in this area.

 
Encourage programs and funding mechanisms that expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field by 2013.

IACC Recommended Budget: $5,000,000 over 3 years
N/A

7.K
$2,527,472
7 projects

7.K
$7,358,427
34 projects

7.K
$4,813,286
27 projects

7.K
$10,003,091
25 projects

$24,702,276
7.K. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective. Many of the fellowship grants are coded according to the specific topic of the research conducted and thus are not represented in this funding figure.

Progress: In 2008, NIH supported 46 autism related training/fellowship grants ($5.1 million), and in 2012 NIH supported 78 such grants ($7.7 million).

Remaining Gaps, Needs and Opportunities: This objective should continue to be encouraged with a possible future emphasis on services-based research.
 
Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015.

IACC Recommended Budget: $16,200,000 over 5 years
N/A

7.L
$699,304
2 projects

7.L
$1,429,602
8 projects

7.L
$705,552
6 projects

7.L
$847,002
6 projects

$3,681,460
7.L. Funding: The recommended budget was partially met, but it is noted that the full funding of the ADDM sites is reflected in Objective 7.I. and thus there may be underrepresentation of funding in this category.

Progress: Supplements have been provided to six ADDM sites by CDC to collect data from a younger cohort (4-year-olds) in addition to the 8 year olds currently studied; two other ADDM sites have received supplements from CDC to conduct surveillance studies among 15 to 18 year olds.  Despite these expansions, further work is needed to better understand prevalence in both younger and older populations. A current project at UNC is reassembling those who participated in TEACCH to conduct a study of long-term outcomes. Also, Paul Shattuck has published studies on young adults with disabilities seeking services that have revealed a significant drop in services use and access post- high school, along with an increased likelihood to remain living with a parent or guardian. In addition, the Utah cohort (mentioned in Question 6) has been used for studies related to adults with autism, with a recent paper identifying health risks and causes of mortality.

Remaining Gaps, Needs and Opportunities: While subtypes were included as part of this objective, with the changes in the DSM to eliminate subtypes, this portion of the objective may no longer be relevant. In the future it may be more useful to collect data on characteristics of children and adults with ASD who participate in studies.
 
Support 10 "Promising Practices" papers that describe innovative and successful services and supports being implemented in communities that benefit the full spectrum of people with ASD, which can be replicated in other communities, by 2015.

IACC Recommended Budget: $75,000 over 5 years
N/A

7.M
$0
0 projects

7.M
$0
0 projects

7.M
$0
0 projects

7.M
$0
0 projects

$0
7.M. Funding: There has been no specific funding for this objective.

Progress: CMS is no longer supporting the program that produced the earlier promising practices papers; it is possible that other methods of disseminating best practices information are now being used.

Remaining Gaps, Needs and Opportunities: Best practices information dissemination is still a high priority, but there may be other means by which this is being done. The focus should be on achieving dissemination rather than on the particular method used. Perhaps this objective should be revisited and replaced with a version that reflects current needs and practices or combined with another objective as appropriate in the future.
 
Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012.

IACC Recommended Budget: $1,850,000 over 1 year
N/A

N/A

7.N
$6,662,790
3 projects

7.N
$7,419,887
22 projects

7.N
$5,270,828
22 projects

$19,353,505
7.N. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress:  Autism Speaks' ATN is a care network that also has research capabilities.  The ATN has a collection of biological samples collected from patients who have sought care at the ATN. However, these samples are not targeted toward research use because the samples are not broadly shared like those from other repositories and the samples were not collected systematically. As the ATN has progressed in its work, it has shifted away from the goal of creating a repository to a new focus on developing clinical guidelines, especially in the area of co-occurring conditions. Several guidelines have been published.  Another network, the Interactive Autism Network (IAN), has piloted a new rapid method of conducting "virtual" clinical trials of low-risk or "safe" treatments.  For example, IAN conducted a trial on omega 3 fatty acids – a commonly used dietary supplement - across 40 states in 10 weeks, demonstrating the value of using interactive research networks for these types of trials.

Remaining Gaps, Needs and Opportunities: Clinical and patient social networks represent new ways to conduct research ("practice to research"), as well as a path for evaluating interventions that do not require extensive safety testing (e.g., alternate diets or technological interventions) quickly using  large social networks.
 
Create an information resource for ASD researchers (e.g., PhenX Project ) to share information to facilitate data sharing and standardization of methods across projects by 2013.
  • This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.
  • This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.
IACC Recommended Budget: $2,000,000 over 2 years
N/A

N/A

7.O
$605,338
3 projects

7.O
$1,070,941
3 projects

7.O
$728,000
1 project

$2,404,279
7.O. Funding: The recommended budget for this objective was met.

Progress: A small number of projects specific to this objective were funded. In addition, there are other projects that are responsive to the goals of this objective, but are coded elsewhere. For example, NDAR has developed a data dictionary that is now widely used across the research community to standardize data terminology so that data can be uniformly shared among researchers. Funding for this project is not reflected in the total for this objective because NDAR is coded elsewhere. NDAR also has a human subject common identifier that is now broadly used by the community.

Remaining Gaps, Needs and Opportunities: Funding is necessary to develop standardized methods and protocols. This is a long term project and will need to be approached carefully.
 
Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013.

IACC Recommended Budget: $1,100,000 over 2 years
N/A

N/A

7.P
$1,588,780
1 project

7.P
$0
0 projects

7.P
$0
0 projects

$1,588,780
7.P. Funding: The recommended budget for this objective was met.

Progress: The project in the Portfolio Analysis that addresses this objective is a NIMH intramural project to produce transgenic mouse models of mental and neurodevelopmental disorders, including ASD. In addition, when mouse models are made under grants and projects coded elsewhere in the portfolio, they are shared via Jackson Laboratories, and that funding is not reflected here.

Remaining Gaps, Needs and Opportunities: Emphasis on providing means to encourage development and sharing of animal models, and development of assays that can be used in animal models is still required to advance basic and translational ASD research.
 
Not specific to any objective (Core/Other Activities) N/A

7.Core/Other Activities
$1,000,000
2 projects

7.Core/Other Activities
$13,253,709
26 projects

7.Core/Other Activities
$12,314,084
18 projects

7.Core/Other Activities
$16,863,272
23 projects

$43,431,065
Total funding for Question 7 N/A

$15,809,755
46 projects

$50,847,065
108 projects

$43,855,291
111 projects

$47,516,197
112 projects

$170,126,365*

Table 8: Question 7 Cumulative Funding Table, see appendix for a color-coding key and further details.

* This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for the years 2008, 2009, and 2010 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

Appendix

ASD Research Progress on IACC Strategic Plan Objectives: Summary of Years 2008 to 2012

The tables include data (project numbers and funding) from Federal and private funders of ASD research for years 2008 through 2012, as aligned with the objectives of the 2011 IACC Strategic Plan. They also include summaries (based on discussions during the 2013 IACC Strategic Plan Update Workshop) of progress on reaching the goals of each objective, as well as remaining gaps, needs, and opportunities. Please note the following:

During the updating of the Strategic Plan from 2008 to 2010, the wording and numbering of objectives changed. Data included in each Portfolio Analysis Report from 2008 to 2012 was categorized at the time with respect to the most recent iteration of the Strategic Plan where the objectives had changed. For the purpose of this five-year comparison, data from the Portfolio Analyses conducted in 2008 and 2009 were aligned with the most recent objectives, found in the 2011 Strategic Plan. The full wording of the 78 objectives listed in the 2011 Strategic Plan is depicted in the left column of the table.

The middle five columns of the table contain the data (project numbers and funding) for each individual year from 2008 to 2012, with the objective number (as it appeared in the annual Portfolio Analysis) listed above it. The IACC recommended budget listed below the project data represents the most updated budget listed in 2011 Strategic Plan. If the recommended budget has been revised since 2008, the year the revision took place is found in parentheses following the budget figure. Therefore, if there is no mention of a revision, the IACC recommended budget has remained constant from 2008 to 2011. The annual project status for each objective from 2008 to 2012 is indicated within the table by colored highlighting of the objective number. An objective is considered active if its status is green or yellow, and inactive if its status is red.

  • Any objective colored green has funding which is greater than or equal to the recommended funding for that year (determined by annualizing the recommended budget associated with that objective); any objective colored yellow has active projects, but with funding that totals less than the annualized recommended amount; while any objective colored red has no active projects.1
  • Objectives whose overarching aim (e.g., the ultimate goal of the research as opposed to the number of projects called for in the objective) were achieved/partially achieved either in a previous year, or with funding that was not captured in the portfolio analyses,2 are colored pale green/pale yellow.

The far right column of the table lists the sum of the total funding aligned with each objective from 2008 to 2012. Highlighting of each total gives an indication of the progress toward fulfilling each objective.

  • Green highlighting indicates that funding fully meets the recommend budget. Yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while red highlighting indicates that there has been no funding towards the particular objective.
  • Objectives whose overarching aim (e.g., the ultimate goal of the research as opposed to the number of projects called for in the objective) was achieved/partially achieved with funding that was not captured in the portfolio analyses, are colored pale green/pale yellow.

1 Please note that while the green, yellow and red indicators suggest a funding status for each year and that looking across all years may give some indication of a trend, that some agencies and organizations provide all the funding for multiyear grants in a single year, resulting in the appearance of "less funding" in other years, but that projects fulfilling the objectives may still have been ongoing in the years where the funding appears to be less. Thus, it is important to note the numbers of projects in looking across the chart, and to keep in mind that in a series, where, for example, most of the indicators are green, that the objective is likely to be largely "complete" according to the funding-based measure.

2 Reasons why funding for certain projects may not have been captured in the portfolio analyses include projects that were supported by funding that was not specific for autism (i.e., projects that benefited autism but were supported by general neuroscience or developmental disorder funding) or projects supported by funders that did not participate in the portfolio analysis in a given year.



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