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Portfolio Analysis Cover 2008

Portfolio Analysis Report

IACC Autism Spectrum Disorder Research

2008

Appendices

Appendix A: ASD Research Progress on 2009 IACC Strategic Plan Objectives

Data includes 2008 funding from Federal/private funders of ASD research.

 

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

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 2008.

Question 1: When should I be concerned?

2009 IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

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

2
(2%)

Funding

$75,000
(<1%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

1.2 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Validate and improve the sensitivity and specificity of new or existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012. IACC Recommended Budget: $5,400,000 over 3 years.

  • School aged children
  • General population (vs. clinical population)

Projects

8
(7%)

Funding

$1,246,922 (4%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

1.3 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. IACC Recommended Budget: $33,300,000 over 5 years.

Projects

14
(13%)

Funding

$2,885,940
(10%)

% of Total Funding

1%

2009 IACC Strategic Plan Objectives

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

18
(17%)

Funding

$5,773,203
(20%)

% of Total Funding

3%

2009 IACC Strategic Plan Objectives

1.5 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Identify and develop measures to assess at least three continuous dimensions of ASD symptoms and severity that can be used by practitioners and/or parents to assess response to intervention for people with ASD across the lifespan by 2016. IACC Recommended Budget: $18,500,000 over 5 years.

Projects

2
(2%)

Funding

$912,159
(3%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

1.Other Not specific to any objective

Projects

63
(59%)

Funding

$18,229,985
(63%)

% of Total Funding

8%

2009 IACC Strategic Plan Objectives

Total Funding for Question 1

Projects

107
(100%)

Funding

$29,123,209
(100%)

% of Total Funding

13%

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 2008.

Question 2: How can I understand what is happening?

2009 IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

2.1 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Establish an international network of biobanks for the collection of brain and other tissue (e.g., skin fibroblasts) with acquisition sites that use standardized protocols for phenotyping, collection and distribution of tissue by 2011. IACC Recommended Budget: $10,500,000 over 2 years.

Projects

1
(<1%)

Funding

$4,318,579
(11%)

% of Total Funding

2%

2009 IACC Strategic Plan Objectives

2.2 Green dot: Objective has greater than or equal to the recommended funding. Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. IACC Recommended Budget: $9,800,000 over 4 years.

Projects

18
(9%)

Funding

$3,377,568
(8%)

% of Total Funding

2%

2009 IACC Strategic Plan Objectives

2.3 Red dot: Objective has no funding. Launch three studies that specifically focus on the neurodevelopment of females with ASD by 2011. IACC Recommended Budget: $8,900,000 over 5 years.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

2.4 Red dot: Objective has no funding. Identify ways to increase awareness among the autism spectrum community of the potential value of brain and tissue donation to further basic research. IACC Recommended Budget: $1,400,000 over 2 years.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

2.5 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 children, 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

49
(24%)

Funding

$8,523,806
(21%)

% of Total Funding

3%

2009 IACC Strategic Plan Objectives

2.6 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Maintain an international network of biobanks and support continued collection of brain and other tissue. IACC Recommended Budget: $22,200,000 over 5 years.

Projects

1
(<1%)

Funding

$700,000
(2%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

2.Other Not specific to any objective

Projects

133
(66%)

Funding

$23,701,450
(58%)

% of Total Funding

11%

2009 IACC Strategic Plan Objectives

Total Funding for Question 2

Projects

202
(100%)

Funding

$40,621,403
(100%)

% of Total Funding

18%

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 2008.

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

2009 IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

3.1 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Initiate studies on at least five 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 2010. IACC Recommended Budget: $23,600,000 over 2 years.

Projects

19
(9%)

Funding

$7,600,673
(9%)

% of Total Funding

3%

2009 IACC Strategic Plan Objectives

3.2 Yellow dot: Objective has some degree of funding, but less than the recommended amount. 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. IACC Recommended Budget: $43,700,000 over 4 years.

Projects

14
(6%)

Funding

$4,065,392
(5%)

% of Total Funding

2%

2009 IACC Strategic Plan Objectives

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

4
(2%)

Funding

$713,227
(1%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

3.4 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

4
(2%)

Funding

$4,703,867
(6%)

% of Total Funding

2%

2009 IACC Strategic Plan Objectives

3.5 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Enhance existing case-control studies to enroll broad ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.

Projects

2
(1%)

Funding

$84,628
(<1%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

3.6 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

13
(6%)

Funding

$1,803,628
(2%)

% of Total Funding

1%

2009 IACC Strategic Plan Objectives

3.7 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

1
(<1%)

Funding

$2,742,999
(3%)

% of Total Funding

1%

2009 IACC Strategic Plan Objectives

3.8 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

83
(38%)

Funding

$37,043,410
(45%)

% of Total Funding

17%

2009 IACC Strategic Plan Objectives

3.9 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 nested, case-control 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

29
(13%)

Funding

$17,297,788
(21%)

% of Total Funding

8%

2009 IACC Strategic Plan Objectives

3.Other Not specific to any objective

Projects

52
(24%)

Funding

$6,791,008
(8%)

% of Total Funding

3%

2009 IACC Strategic Plan Objectives

Total Funding for Question 3

Projects

221
(100%)

Funding

$82,846,620
(100%)

% of Total Funding

37%

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 2008.

Question 4: Which treatments and interventions will help?

2009 IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

4.1 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Launch at least four research projects that seek to identify biological signatures that measure significant changes in ASD core symptoms across the lifespan by 2010. IACC Recommended Budget: $12,700,000 over 4 years.

Projects

5
(3%)

Funding

$1,047,768
(2%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

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

5
(3%)

Funding

$4,583,171
(9%)

% of Total Funding

2%

2009 IACC Strategic Plan Objectives

4.3 Green dot: Objective has greater than or equal to the recommended funding. Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011. IACC Recommended Budget: $16,700,000 over 5 years.

Projects

16
(9%)

Funding

$8,071,787
(15%)

% of Total Funding

4%

2009 IACC Strategic Plan Objectives

4.4 Green dot: Objective has greater than or equal to the recommended funding. Launch three randomized controlled trials of interventions for school-aged and/or adolescents by 2012. IACC Recommended Budget: $15,600,000 over 5 years.

Projects

30
(17%)

Funding

$4,037,729
(7%)

% of Total Funding

2%

2009 IACC Strategic Plan Objectives

4.5 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

42
(24%)

Funding

$15,879,827
(30%)

% of Total Funding

7%

2009 IACC Strategic Plan Objectives

4.6 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, medical procedures) that have not been rigorously studied for use in ASD by 2012. IACC Recommended Budget: $27,800,000 over 5 years.

Projects

8
(5%)

Funding

$641,285
(1%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

4.7 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

5
(3%)

Funding

$4,236,869
(8%)

% of Total Funding

2%

2009 IACC Strategic Plan Objectives

4.8 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

12
(7%)

Funding

$1,380,376
(3%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

4.9 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

1
(<1%)

Funding

$14,256
(<1%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

4.Other Not specific to any objective

Projects

54
(30%)

Funding

$14,075,905
(26%)

% of Total Funding

6%

2009 IACC Strategic Plan Objectives

Total Funding for Question 4

Projects

178
(100%)

Funding

$53,968,973
(100%)

% of Total Funding

24%

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 2008.

Question 5: Where can I turn for services?

2009 IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

5.1 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Initiate a "State of the States" assessment of existing state programs and supports for people and families living with ASD by 2009. IACC Recommended Budget: $630,000 over 2 years.

Projects

6
(40%)

Funding

$311,670
(18%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

5.2 Red dot: Objective has no funding. Support two studies that assess how variations and access to services affect family functioning in diverse populations by 2012. IACC Recommended Budget: $1,000,000 over 3 years.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

5.3 Red dot: Objective has no funding. Test the efficacy and cost-effectiveness of at least four evidence-based services for people with ASD of all ages in community settings by 2015. IACC Recommended Budget: $16,700,000 over 5 years.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

5.4 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Test four methods to improve dissemination of effective interventions in diverse community settings by 2013. IACC Recommended Budget: $7,000,000 over 5 years

Projects

2
(15%)

Funding

$125,838
(7%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

5.Other Not specific to any objective

Projects

5
(38%)

Funding

$1,247,714
(74%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

Total Funding for Question 5

Projects

13
(100%)

Funding

$1,685,222
(100%)

% of Total Funding

1%

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 2008.

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

2009 IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

6.1 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

4
(44%)

Funding

$6,767,808
(69%)

% of Total Funding

3%

2009 IACC Strategic Plan Objectives

6.2 Red dot: Objective has no funding. Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

6.3 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Conduct at least two clinical trials to test the efficacy and cost-effectiveness of interventions, services and supports to optimize daily functioning (e.g., educational, vocational, recreational, and social experiences) for adolescents, adults, or seniors living with ASD by 2012. IACC Recommended Budget: $8,000,000 over 5 years.

Projects

2
(22%)

Funding

$90,000
(1%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

6.4 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 health care, education, and social services by 2009. IACC Recommended Budget: $520,000 over 1 year.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

6.5 Yellow dot: Objective has some degree of funding, but less than the recommended amount. Develop at least two community-based interventions with individual specificity that improves outcomes, as measured by educational, occupational, and social achievements by 2015. IACC Recommended Budget: $12,900,000 over 5 years.

Projects

1
(11%)

Funding

$2,471,000
(25%)

% of Total Funding

1%

2009 IACC Strategic Plan Objectives

6.6 Red dot: Objective has no funding. Develop and have available to the research community means by which to merge or link administrative databases that allow for tracking the involvement of people living with ASD research in health care, education, and social services by 2018. IACC Recommended Budget and Time Frame: To Be Determined.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

6.7 Red dot: Objective has no funding. Conduct a cost/benefit analysis on provision of services and interventions over the lifespan with regard to long-term benefits including employment, productivity, and the need for federal/state assistance. IACC Recommended Budget: $2,300,000 over 3 years.

Projects

$0
(0%)

Funding

$0
(0%)

% of Total Funding

0%

2009 IACC Strategic Plan Objectives

6.Other Not specific to any objective

Projects

2
(22%)

Funding

$467,683
(5%)

% of Total Funding

<1%

2009 IACC Strategic Plan Objectives

Total Funding for Question 6

Projects

9
(100%)

Funding

$9,796,491
(100%)

% of Total Funding

5%

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 2008.

Not specific to Strategic Plan Questions

IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

Other

Projects

14
(100%)

Funding

$4,173,424
(100%)

% of Total Funding

2%

Grand Total

IACC Strategic Plan Objectives Projects Funding % of Total Funding

2009 IACC Strategic Plan Objectives

Total ASD Funding for 2008

Projects

744

Funding

$222,215,342

% of Total Funding

100%

Appendices

 
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