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Portfolio Analysis Cover 2010
Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
2010
Appendices

Appendix A: ASD Research Progress on 2011 IACC Strategic Plan Objectives


 

Data includes 2010 funding from Federal/private funders of ASD research and 2010 ARRA funding.

 

Green dot: Objective has greater than or equal to the recommended funding. Yellow dot: Objective has some degree of funding, but less than the recommended amount. Red dot: Objective has no funding.

Current project and funding status for each question or objective is indicated within the table by colored "dots" next to the objective. Any objective colored green has greater than or equal to the recommended funding; any objective colored yellow has some degree of funding, but less than the recommended amount; while any objective colored red has no funding.

 

New!

Objectives labeled "New!" are either entirely new additions to the 2011 Strategic Plan or significantly modified objectives from the 2010 Strategic Plan. Objectives from the 2010 Strategic Plan that did not change or that have been slightly modified for clarification purposes in the 2011 Strategic Plan are unmarked.

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Question 1: When should I be concerned?

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

1.S.A Green dot: Objective has greater than or equal to the recommended funding. Develop, with existing tools, at least one efficient diagnostic instrument (e.g., 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.

Projects

15
(9%)

Funding

$4,963,192
(11%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

1.S.B Green dot: Objective has greater than or equal to the recommended funding. 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, socioeconomic status, race, ethnicity, gender, characteristics of ASD, and general level of functioning by 2012. IACC Recommended Budget: $5,400,000 over 3 years.

Projects

11
(7%)

Funding

$2,443,557
(5%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

1.S.C Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

1.S.D Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

New!
1.S.E Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

3
(2%)

Funding

$2,180,042
(5%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

New!
1.S.F Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

1.L.A Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

45
(27%)

Funding

$13,270,045
(29%)

Percent of Total ASD Funding

3%

2011 IACC Strategic Plan Objectives

1.L.B Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

52
(31%)

Funding

$15,228,060
(33%)

Percent of Total ASD Funding

4%

2011 IACC Strategic Plan Objectives

1.L.C Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

22
(13%)

Funding

$3,893,622
(9%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

1.Other Not specific to any objective

Projects

18
(11%)

Funding

$3,643,562 (8%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

Total Funding for Question 1

Projects

166
(100%)

Funding

$45,622,080
(100%)

Percent of Total ASD Funding

11%

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Question 2: How can I understand what is happening?

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

2.S.A Green dot: Objective has greater than or equal to the recommended funding. 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. IACC Recommended Budget: $9,800,000 over 4 years. (Fever studies to be started by 2012.)

Projects

37
(9%)

Funding

$4,972,407
(5%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

2.S.B Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

5
(1%)

Funding

$1,096,678
(1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

2.S.C Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

1
(<1%)

Funding

$17,000
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

2.S.D Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

57
(14%)

Funding

$13,162,905
(14%)

Percent of Total ASD Funding

3%

2011 IACC Strategic Plan Objectives

2.S.E Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

14
(3%)

Funding

$4,611,058
(5%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

2.S.F Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

2
(<1%)

Funding

$401,595
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

2.S.G Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

39
(10%)

Funding

$9,149,672
(10%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

2.L.A Yellow dot: Objective has some degree of funding, but less than the recommended amount. Complete a large-scale, multi-disciplinary, 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.

Projects

6
(1%)

Funding

$2,283,875
(3%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

2.L.B Yellow dot: Objective has some degree of funding, but less than the recommended amount. Launch at least three studies which 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.

Projects

2
(<1%)

Funding

$450,271
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

2.Other Not specific to any objective

Projects

246
(60%)

Funding

$55,114,888
(60%)

Percent of Total ASD Funding

13%

2011 IACC Strategic Plan Objectives

Total Funding for Question 2

Projects

409
(100%)

Funding

$91,260,349
(100%)

Percent of Total ASD Funding

22%

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Question 3: What caused this to happen and can it be prevented?

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

3.S.A Green dot: Objective has greater than or equal to the recommended funding. 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 that share an identified genetic variant and stratify subjects according to behavioral, cognitive, and clinical features. IACC Recommended Budget: $43,700,000 over 4 years.

Projects

14
(9%)

Funding

$16,688,932
(21%)

Percent of Total ASD Funding

4%

2011 IACC Strategic Plan Objectives

3.S.B Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

3.S.C Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

8
(5%)

Funding

$4,824,779
(6%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

3.S.D Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

3.S.E Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

10
(6%)

Funding

$1,162,679
(1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

3.S.F Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

5
(3%)

Funding

$166,362
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

New!
3.S.G Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

New!
3.S.H Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

13
(8%)

Funding

$1,527,866
(2%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

New!
3.S.I Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

3
(2%)

Funding

$53,960
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

New!
3.S.J Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

15
(9%)

Funding

$5,072,389
(6%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

New!
3.S.K Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

5
(3%)

Funding

$733,922
(1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

3.L.A Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

2
(1%)

Funding

$2,971,093
(4%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

3.L.B Green dot: Objective has greater than or equal to the recommended funding. Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years.

Projects

60
(37%)

Funding

$34,432,884
(42%)

Percent of Total ASD Funding

8%

2011 IACC Strategic Plan Objectives

3.L.C Yellow dot: Objective has some degree of funding, but less than the recommended amount. Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years.

Projects

10
(6%)

Funding

$820,320
(1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

3.L.D Green dot: Objective has greater than or equal to the recommended funding. Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. 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.

Projects

10
(6%)

Funding

$11,464,011
(14%)

Percent of Total ASD Funding

3%

2011 IACC Strategic Plan Objectives

3.Other Not specific to any objective

Projects

7
(4%)

Funding

$1,312,450 (2%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

Total Funding for Question 3

Projects

162
(100%)

Funding

$81,231,647
(100%)

Percent of Total ASD Funding

20%

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Question 4: Which treatments and interventions will help?

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

4.S.A Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

4
(1%)

Funding

$3,787,700
(6%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

4.S.B Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

92
(33%)

Funding

$23,229,501
(34%)

Percent of Total ASD Funding

6%

2011 IACC Strategic Plan Objectives

4.S.C Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

18
(6%)

Funding

$1,509,745
(2%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

4.S.D Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

18
(6%)

Funding

$10,306,148
(15%)

Percent of Total ASD Funding

3%

2011 IACC Strategic Plan Objectives

4.S.E Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

4.S.F Yellow dot: Objective has some degree of funding, but less than the recommended amount. Launch five 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.
  • Three randomized controlled trials of interventions for school-aged children and/or adolescents by 2013. IACC Recommended Budget: $18,000,000 over 5 years.
  • Three trials for adults by 2014. IACC Recommended Budget: $18,000,000 over 5 years.

Projects

30
(11%)

Funding

$7,575,212
(11%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

New!
4.S.G Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

11
(4%)

Funding

$1,907,721
(3%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

New!
4.S.H Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

2
(1%)

Funding

$225,877
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

4.L.A Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

11
(4%)

Funding

$1,924,932
(3%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

4.L.B Yellow dot: Objective has some degree of funding, but less than the recommended amount. Develop interventions for siblings of people with ASD with the goal of reducing risk recurrence by at least 30% by 2014. IACC Recommended Budget: $6,700,000 over 5 years.

Projects

3
(1%)

Funding

$307,349
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

4.L.C Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

7
(3%)

Funding

$2,302,240
(3%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

New!
4.L.D Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

32
(12%)

Funding

$8,756,832
(13%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

4.Other Not specific to any objective

Projects

49
(18%)

Funding

$6,290,633
(9%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

Total Funding for Question 4

Projects

277
(100%)

Funding

$68,123,890
(100%)

Percent of Total ASD Funding

17%

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Question 5: Where can I turn for services?

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

5.S.A Green dot: Objective has greater than or equal to the recommended funding. Support two studies that assess how variations and access to services affect family functioning in diverse populations, including underserved populations, by 2012. IACC Recommended Budget: $1,000,000 over 3 years.

Projects

9
(4%)

Funding

$2,061,834
(3%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

5.S.B Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

6
(3%)

Funding

$291,635
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

5.S.C Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

15
(7%)

Funding

$4,225,315
(7%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

New!
5.S.D Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

3
(1%)

Funding

$159,135
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

5.L.A Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

22
(10%)

Funding

$7,747,912
(12%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

5.L.B Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

5.L.C Green dot: Objective has greater than or equal to the recommended funding. 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 promote interdisciplinary practice by 2015. IACC Recommended Budget: $8,000,000 over 5 years.

Projects

83
(39%)

Funding

$36,433,257
(56%)

Percent of Total ASD Funding

9%

2011 IACC Strategic Plan Objectives

New!
5.L.D Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

5
(2%)

Funding

$296,840
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

New!
5.L.E Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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. IACC Recommended Budget: $900,000 over 3 years.
  • One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD. IACC Recommended Budget: $900,000 over 3 years.
  • 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.

Projects

2
(1%)

Funding

$196,457
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

5.Other Not specific to any objective

Projects

66
(31%)

Funding

$13,436,737
(21%)

Percent of Total ASD Funding

3%

2011 IACC Strategic Plan Objectives

Total Funding for Question 5

Projects

211
(100%)

Funding

$64,849,122
(100%)

Percent of Total ASD Funding

16%

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Question 6: What does the future hold, particularly for adults?

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

6.S.A Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

2
(6%)

Funding

$283,837
(4%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

6.S.B Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

2
(6%)

Funding

$700,000
(11%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

6.S.C Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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, track outcomes, with consideration of ethical issues (insurance, employment, stigma) by 2015. IACC Recommended Budget: $8,400,000 over 5 years.

Projects

1
(3%)

Funding

$28,000
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

6.S.D Yellow dot: Objective has some degree of funding, but less than the recommended amount. Conduct at least one study to measure and improve the quality of life-long 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 5 years.

Projects

3
(9%)

Funding

$619,163
(9%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

6.L.A Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

18
(53%)

Funding

$2,285,071
(34%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

6.L.B Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

3
(9%)

Funding

$1,280,790
(19%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

6.L.C Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

2
(6%)

Funding

$774,644
(12%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

6.L.D Red dot: Objective has no funding. 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 on the ASD spectrum over age 21 by 2023. IACC Recommended Budget: $4,000,000 over 5 years.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

6.Other Not specific to any objective

Projects

3
(9%)

Funding

$671,619
(10%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

Total Funding for Question 6

Projects

34
(100%)

Funding

$6,643,124
(100%)

Percent of Total ASD Funding

2%

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Question 7: What other infrastructure and surveillance needs must be met?

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

7.A Red dot: Objective has no funding. 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 healthcare, education and social services by 2009. IACC Recommended Budget: $520,000 over 1 year.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

7.B Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

1
(1%)

Funding

$197,128
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

7.C Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

5
(5%)

Funding

$2,785,368
(5%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

7.D Yellow dot: Objective has some degree of funding, but less than the recommended amount. Establish and maintain an international network of biobanks for the collection of brain, 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.

Projects

6
(6%)

Funding

$7,814,918
(15%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

7.E Green dot: Objective has greater than or equal to the recommended funding. Begin development of a web-based toolbox to assist researchers in effectively and responsibly disseminating their finding to the community, including people with ASD, their families, and health practitioners by 2011. IACC Recommended Budget: $400,000 over 2 years.

Projects

1
(1%)

Funding

$390,134
(1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

7.F Red dot: Objective has no funding. Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011. (No recommended budget assigned by the IACC.)

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

7.G Red dot: Objective has no funding. Develop a web-based tool which 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

7.H Yellow dot: Objective has some degree of funding, but less than the recommended amount. Create mechanisms to specifically support the contribution of data from 90 percent 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.

Projects

3
(3%)

Funding

$2,453,253
(5%)

Percent of Total ASD Funding

1%

2011 IACC Strategic Plan Objectives

7.I Green dot: Objective has greater than or equal to the recommended funding. Supplement existing ADDM Network sites to use population-based surveillance data to conduct at least 5 hypothesis-driven analyses evaluating factors that may contribute to changes in ASD prevalence by 2012. IACC Recommended Budget: $660,000 over 2 years.

Projects

13
(12%)

Funding

$6,137,128
(12%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

7.J Yellow dot: Objective has some degree of funding, but less than the recommended amount. Develop the personnel and technical infrastructure to assist states, territories, and other countries who 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.

Projects

4
(4%)

Funding

$170,490
(<1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

7.K Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

34
(31%)

Funding

$7,358,427
(14%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

7.L Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

8
(7%)

Funding

$1,429,602
(3%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

7.M Red dot: Objective has no funding. 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.

Projects

0
(0%)

Funding

$0
(0%)

Percent of Total ASD Funding

0%

2011 IACC Strategic Plan Objectives

New!
7.N Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

3
(3%)

Funding

$6,662,790
(13%)

Percent of Total ASD Funding

2%

2011 IACC Strategic Plan Objectives

New!
7.O Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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.

Projects

3
(3%)

Funding

$605,338
(1%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

New!
7.P Green dot: Objective has greater than or equal to the recommended funding. 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.

Projects

1
(1%)

Funding

$1,588,780
(3%)

Percent of Total ASD Funding

<1%

2011 IACC Strategic Plan Objectives

7.Other Not specific to any objective

Projects

26
(24%)

Funding

$13,253,709
(26%)

Percent of Total ASD Funding

3%

2011 IACC Strategic Plan Objectives

Total Funding for Question 7

Projects

108
(100%)

Funding

$50,847,065
(100%)

Percent of Total ASD Funding

12%

The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.

Grand Total

2011 IACC Strategic Plan Objectives Projects Funding Percent of Total ASD Funding

2011 IACC Strategic Plan Objectives

Total ASD Funding for 2010

Projects

1,367

Funding

$408,577,276

Percent of Total ASD Funding

100%

Appendix B: Subcategory Definitions

Question 1: Diagnosis

Diagnostic and screening tools: This subcategory includes projects that are developing new autism diagnostic and screening tests, as well as those establishing the usefulness of new or revised assessments for autism symptoms. It also encompasses projects aimed at adapting clinical assessments into other languages for use in multi-lingual community settings and non-U.S. countries.

Early signs and biomarkers: Projects which use a variety of methods to search for signs of autism in very young children (generally under age 3) that could be used for diagnosis, such as eye-tracking, physiological measures, and autism-specific behavioral patterns are included in this subcategory. More examples include projects investigating metabolic measures, such as the levels of specific chemicals, hormones, or proteins in the blood that could be used as biomarkers of the disorder.

Intermediate phenotypes/Subgroups: Included in this subcategory are projects aimed at identifying distinct subgroups of people with autism, or those that share common morphological, physiological, or behavioral features. Projects in this subcategory use a variety of methods to identify and distinguish these groups.

Symptomology: These projects seek to define the broad range and severity of autism symptoms, including both biological and behavioral characteristics. Among these studies are some that examine how children and adults with autism vary in their development of social communication and language. Other projects seek to understand the emergence of problem behaviors and how neurocognitive impairments can contribute to symptom development and phenotypic variability in those with an autism diagnosis.

Question 2: Biology

Cognitive studies: These are studies of psychological and mental processes, including memory, producing and understanding language, solving problems, and making decisions. Projects in this subcategory consist of those that investigate theory of mind, social cognition and empathy, understanding facial expressions of emotion (and how and why this is impaired in ASD), and recall and memory.

Computational science: Computational methods and modeling allow for the synthesis and study of large and complex sets of data. Some projects in this subcategory collect extensive experimental biological and behavioral data and use powerful computing techniques to reveal new insights. Other aspects of computer science are also included, such as developing statistical modeling techniques to better understand the biology of autism.

Co-occurring conditions: Research on conditions that often co-occur with ASD is included here, such as seizures/epilepsy, sleep disorders, gastrointestinal dysfunction, wandering/elopement behavior, attention deficit hyperactivity disorder (ADHD), and familial autoimmune disorders.

Developmental trajectory: Projects in this subcategory often include longitudinal studies following various aspects of biological and behavioral development in the same individuals over time. Examples include brain growth, face processing, change in neural connectivity over time, and development of communication skills and language processing. These studies often compare children with ASD to typically developing children or to their unaffected siblings.

Immune/Metabolic pathways: These projects focus on understanding the biological mechanisms of metabolism and the immune system that may be altered in autism, typically in cells and animal models. This largely includes studies on inflammation and inflammatory molecules (i.e., cytokines), as well as on the role of mitochondria, energy metabolism, and oxidative stress. Also included in this group are projects seeking to identify specific immune and metabolic triggers in early prenatal and post-natal life, such as maternal infection, maternal auto-antibodies, and toxic exposures.

Molecular pathways: This subcategory includes studies on specific molecules and proteins (other than the immune and metabolic systems) that may be involved in the development of ASD and related genetic disorders (e.g., fragile X syndrome and Rett syndrome). Many of these projects use animal and cellular models to explore the biological effects of specific candidate genes and to identify common molecular pathways, including alterations in synaptic functioning and intracellular signaling cascades.

Neural systems: Studies in this subcategory explore the structure and activity of the brain and underlying neural systems involved in autism, including functional connections between brain regions. Many projects seek to identify the precise neural networks underlying communication and language processing, social interactions, and behavioral issues. These studies frequently employ imaging techniques, such as functional magnetic resonance imaging (fMRI) and diffusion tensor imaging (DTI), and other physiological measures of brain activity, such as electroencephalography (EEG).

Neuropathology: These projects typically include post-mortem examination of brain tissue from ASD individuals. Many of the studies in this subcategory explore how the architecture of the brain may be altered in individuals with autism or how gene expression varies in different areas of the brain.

Sensory and motor function: Projects in this subcategory explore the neural underpinnings of motor skills and abilities in children with ASD and assess visual, auditory, and other sensory processes in the brain.

Subgroups/Biosignatures: Because there is so much heterogeneity among individuals with autism, research to understand how certain subgroups of individuals that share certain behavioral or biological characteristics could help understand some of the underlying biology in ASD. This can be done by searching for certain biological factors ("signatures"), such as hormone levels or structural abnormalities in the brain, that define a particular subgroup. Many of these projects try to make the connection between certain genes with a known or suspected link to autism and the observable characteristic, or phenotype, that they cause.

Question 3: Risk Factors

Environment: This subcategory includes a number of projects investigating potential environmental risk factors for autism. Example projects include studies of the effects of the microbiome, environmental contaminants and toxins, maternal dietary factors, medications taken during pregnancy or to induce labor, assistive reproductive treatments, child and maternal response to immune challenge, and registries where many of these factors can be tracked simultaneously.

Epigenetics: Epigenetics is the study of heritable changes in gene function that occur without a change in the DNA sequence (such as methylation of DNA). Environmental factors can cause these changes in gene expression, and projects in this subcategory seek to identify some of the environmental influences that may lead to these epigenetic changes.

Gene-Environment: These studies search for combinations of environmental risk factors and genetic susceptibility that increase the risk for ASD. (Note: While epigenetic studies often fit this definition, they are tracked separately for strategic planning purposes.)

Genetic risk factors: Projects in this subcategory seek to identify new genes that are implicated in increased risk for ASD or to better understand genetic risk factors that were previously identified.

Question 4: Treatments and Interventions

Behavioral: Projects in this subcategory involve a wide array of behavioral research and training methods, including applied behavior analysis (ABA), cognitive-behavioral therapy, discrete trial training, Early Start Denver Model, imitation training, joint attention training, Lovaas method, pivotal response training, sibling-mediated interventions, and social skills training.

Complementary, dietary, and alternative: This subcategory includes research on acupressure; acupuncture; antioxidants; cholesterol supplementation; glutathione metabolism; nutritional supplements, vitamins, and minerals; probiotics; and special diets (e.g., gluten-free, casein-free).

Educational: Nearly all research in classroom settings falls under this subcategory, including curricula, educational best practices, inclusive education programs, math and reading training, positive behavioral supports, special education programs, TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children), and the "Social Stories" approach.

Medical/Pharmacologic: This subcategory includes research on drugs (e.g., antidepressants, anticonvulsants, antipsychotics, anxiolytics, melatonin, and stimulants) to treat autism and its co-occurring conditions, as well as medical therapies such as transcranial magnetic stimulation (TMS).

Model systems/Therapeutic targets: Animal models mimicking behaviors of ASD and those that are being used to develop or test new drug treatments, as well as cell lines used to discover new drug targets or to screen potential drug candidates, are included in this subcategory.

Occupational, physical, and sensory-based: Therapies in this subcategory encompass art therapy, motor training (including fine motor skills such as handwriting as well as gross motor training involving balance and posture), music therapy, occupational therapy, pet (animal) therapy, physical activity plans and exercise therapy (bike riding, swimming), physical therapy, sensory integration, therapeutic horseback riding, training in self-care and daily living skills, and vocational rehabilitation.

Technology-based interventions and supports: Augmentative and alternative communication (AAC), computer applications and software, picture exchange communication system (PECS), social robots, teleconferencing, video modeling and virtual reality (including virtual and 3D environments to mimic social situations), and wearable sensors are all examples of the types of technology in the projects in this subcategory.

Question 5: Services

Community inclusion programs: These programs provide instruction in social, communication, and leisure skills to enable individuals with autism to participate in sports, recreation, and social-integration activities in fully integrated settings and to build successful relationships with others.

Efficacious and cost-effective service delivery: This subcategory includes programs involving web-based curricula and interventions as well as telehealth methodology, all of which could benefit those in underserved areas. Various parent training projects (to deliver a behavioral therapy, for example) using web-based methods such as teleconsultation and videofeedback make distributing the training programs cost-effective and accessible across the country. Studies to improve dental care are also in this subcategory for effective service delivery.

Family well-being and safety: Studies in this subcategory evaluate issues of caregiver stress and measures of quality of life for individuals with ASD and their families, as well as assess programs to help parents navigate the service system after their child receives an ASD diagnosis. It also surveys safety issues for those with autism, including wandering and bullying.

Practitioner training: Projects in this subcategory seek to increase skill levels in service providers, including medical providers, direct support workers, parents and legal guardians, education staff, and public service workers.

Services utilization and access: These projects include surveys of service systems available in different States, evaluations of patterns of medical service use among children with autism, a comprehensive online resource for autism services, and specific efforts in several States to coordinate services for people with autism. They also evaluate disparities in diagnosis and service utilization as well as barriers to access for racial and ethnic minorities.

Question 6: Lifespan Issues

Due to the small number of projects (34) and the significant overlap between topics covered in these projects, no subcategories were created for this question in the 2010 Portfolio Analysis Report. As the research field grows, subcategories that encapsulate the scope of projects in this question may be defined in the future.

Question 7: Infrastructure and Surveillance

Biobanks: A biobank is a type of biorepository which stores human biological samples for use in research. Projects in this subcategory support collection of DNA and tissue samples from autism patients.

Data tools: These projects include bioinformatics databases to store genetic, phenotypic, and other medical information from autism patients. They also support infrastructure for several of these major databases to interact.

Research infrastructure: This subcategory includes coordinating centers that support multiple research projects by running tests, analyzing data, and providing statistical analyses. These projects also support facilities that operate large, shared instruments used by several scientists to test research samples.

Research recruitment and clinical care: Projects in this subcategory help increase participation in research studies and conduct medical evaluations for the participants, often collecting data that can be used for multiple studies.

Research workforce development: Workshops, conferences, and training programs that serve to expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field are included in this subcategory.

Surveillance and prevalence studies: Research that measures autism prevalence in the U.S. and internationally is contained in this subcategory, including the Autism and Developmental Disabilities Monitoring (ADDM) Network sites maintained by the Centers for Disease Control and Prevention (CDC).

Appendix C: NIH ARRA Initiatives

The table below lists the American Recovery and Reinvestment Act (ARRA) funding initiatives from the National Institutes of Health (NIH) that specifically mention autism or that funded autism research projects. For additional details, the announcement number can be searched at http://grants1.nih.gov/grants/guide/index.html. In the table, the "Activity Code" refers to the type of funding mechanism used to support the research projects (described in detail below the table).

Announcement Number Release Date Activity Code Title

Announcement Number

RFA-MH-09-170

Release Date

03/23/2009

Activity Code

R01

Title

Research to Address the Heterogeneity in Autism Spectrum Disorders

Announcement Number

RFA-MH-09-171

Release Date

03/23/2009

Activity Code

R01 collaborative

Title

Research to Address the Heterogeneity in Autism Spectrum Disorders

Announcement Number

RFA-MH-09-172

Release Date

03/23/2009

Activity Code

R21

Title

Research to Address the Heterogeneity in Autism Spectrum Disorders

Announcement Number

RFA-MH-09-173

Release Date

03/23/2009

Activity Code

R34 and R34 collaborative

Title

Research to Address the Heterogeneity in Autism Spectrum Disorders

Announcement Number

RFA-OD-09-003

Release Date

03/04/2009

Activity Code

RC1

Title

NIH Challenge Grants in Health and Science Research: 04-MH-101: Autism: Addressing the Challenge

Announcement Number

RFA-OD-09-003

Release Date

03/04/2009

Activity Code

RC1

Title

NIH Challenge Grants in Health and Science Research: 05-MH-101: Leveraging Existing Healthcare Networks for Comparative Effectiveness Research on Mental Disorders and Autism

Announcement Number

RFA-OD-09-003

Release Date

03/04/2009

Activity Code

RC1

Title

NIH Challenge Grants in Health and Science Research: 05-MH-103: Collaboration with AHRQ Comparative Effectiveness Research Program

Announcement Number

RFA-OD-09-003

Release Date

03/04/2009

Activity Code

RC1

Title

NIH Challenge Grants in Health and Science Research: 05-MH-104: Building ASD Registries for Use in Comparative Effectiveness Research

Announcement Number

RFA-OD-09-003

Release Date

03/04/2009

Activity Code

RC1

TitleD

NIH Challenge Grants in Health and Science Research: 08-MH-101: Beyond GWAS: Deep Sequencing of Mental Disorders

Announcement Number

RFA-OD-O9-005

Release Date

3/30/2009

Activity Code

P30

Title

Supporting New Faculty Recruitment to Enhance Research Resources through Biomedical Research Core Centers

Announcement Number

RFA-OD-09-007

Release Date

4/20/2009

Activity Code

R15

Title

Academic Research Enhancement Award

Announcement Number

RFA-OD-10-005

Release Date

12/28/2009

Activity Code

RC4

Title

NIH Director's Opportunity for Research in Five Thematic Areas

R01: Supports a research project in an area representing the specific interest and competencies of the investigator.
R21: Exploratory/developmental grant to encourage the development of new research activities.
R34: Provides support for the initial development of a clinical trial.
RC1: NIH Challenge Grants in Health and Science Research
P30: Supports shared resources and facilities for research by several investigators from different disciplines that focus on a common research area.
R15: Academic Research Enhancement Awards (AREA) that support small scale research projects primarily at undergraduate institutions.
RC4: Supports high impact research and research infrastructure programs.

Footnotes

1 Budget recommendations were formulated by scientific and program experts in the field and provide an estimate of what it would cost to conduct each project. The IACC provides these budget recommendations as guidance to Federal agencies and partner organizations on the potential cost of conducting the recommended research. The IACC's role in research is advisory, and the Committee does not have its own research budget to conduct or support research.

Cover Design
Nicole Jones, Office of Autism Research Coordination, National Institute of Mental Health, NIH

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2010 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. July 2012. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/portfolio-analysis/2010/index.shtml.

Appendices

 
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