Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
2009
Appendix A: ASD Research Progress on 2010 IACC Strategic Plan Objectives
Data includes 2009 funding from Federal/private funders of ASD research and 2009 NIH-ARRA funding. |
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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. |
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New! |
Objectives labeled "New!" are either entirely new additions to the 2010 Strategic Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic Plan that did not change or that have been slightly modified for clarification purposes in the 2010 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 2009.
Question 1: When should I be concerned?
2010 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan Objectives1.S.A 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. | Projects15 |
FundingD$4,728,120 |
Percent of Total ASD Funding2% |
2010 IACC Strategic Plan Objectives1.S.B Validate and improve the sensitivity and specificity of new or existing screening and diagnostic tools, including comparison of general developmental screening versus autism-specific screening tools, in both high risk and population-based samples through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity, characteristics of ASD, and general level of functioning by 2012. IACC Recommended Budget: $5,400,000 over 3 years. | Projects11 |
Funding$3,973,711 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects1 |
Funding$139,072 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan Objectives1.L.A 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 by 2014. IACC Recommended Budget: $33,300,000 over 5 years. | Projects43 |
Funding$16,465,034 (37%) |
Percent of Total ASD Funding5% |
2010 IACC Strategic Plan Objectives1.L.B 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. | Projects34 |
Funding$8,760,010 |
Percent of Total ASD Funding3% |
2010 IACC Strategic Plan Objectives1.L.C 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. | Projects6 |
Funding$861,069 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan Objectives1.O Not specific to any objective | Projects37 |
Funding$9,766,926 |
Percent of Total ASD Funding3% |
Total Funding for Question 1 | Projects147 |
Funding$44,693,942 |
Percent of Total ASD Funding14% |
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 2009.
Question 2: How can I understand what is happening?
2010 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan Objectives2.S.A 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 Funding Budget: $9,800,000 over 4 years. | Projects30 |
Funding$3,584,634 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan Objectives2.S.B 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. | Projects5 |
Funding$1,370,107 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan Objectives2.S.C 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. | Projects2 |
Funding$726,911 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew!
| Projects48 |
Funding$9,171,542 |
Percent of Total ASD Funding3% |
2010 IACC Strategic Plan ObjectivesNew!
| Projects11 |
Funding$3,893,300 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan ObjectivesNew!
|
Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew! | Projects21 |
Funding$5,903,875 |
Percent of Total ASD Funding2% |
2010 IACC Strategic Plan Objectives2.L.A 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. | Projects6 |
Funding$2,721,384 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects16 |
Funding$1,532,262 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan Objectives | Projects163 |
Funding$34,348,932 (54%) |
Percent of Total ASD Funding11% |
2010 IACC Strategic Plan ObjectivesTotal Funding for Question 2 | Projects302 |
Funding$63,252,949 |
Percent of Total ASD Funding20% |
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 2009.
Question 3: What caused this to happen and can it be prevented?
2010 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan Objectives3.S.A 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. | Projects11 |
Funding$13,926,663 |
Percent of Total ASD Funding4% |
2010 IACC Strategic Plan Objectives3.S.B 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. | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan Objectives3.S.C 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. | Projects9 |
Funding$8,033,454 |
Percent of Total ASD Funding3% |
2010 IACC Strategic Plan Objectives3.S.D 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. | Projects3 |
Funding$103,827 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects13 |
Funding$1,739,200 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects14 |
Funding$2,952,960 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan Objectives3.L.A 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. | Projects2 |
Funding$3,740,812 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan Objectives3.L.B Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years. | Projects79 |
Funding$49,905,587 |
Percent of Total ASD Funding16% |
2010 IACC Strategic Plan Objectives3.L.C 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. | Projects10 |
Funding$1,992,228 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan Objectives3.L.D 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. | Projects12 |
Funding$9,135,505 |
Percent of Total ASD Funding3% |
2010 IACC Strategic Plan Objectives | Projects39 |
Funding$8,512,980 |
Percent of Total ASD Funding3% |
2010 IACC Strategic Plan ObjectivesTotal Funding for Question 3 | Projects192 |
Funding$100,043,216 |
Percent of Total ASD Funding32% |
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 2009.
Question 4: Which treatments and interventions will help?
2010 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan Objectives4.S.A 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. | Projects6 |
Funding$4,733,841 |
Percent of Total ASD Funding2% |
2010 IACC Strategic Plan Objectives4.S.B 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. | Projects70 |
Funding$20,162,709 |
Percent of Total ASD Funding6% |
2010 IACC Strategic Plan Objectives4.S.C 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. | Projects29 |
Funding$3,252,941 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan Objectives4.S.D 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. | Projects9 |
Funding$7,540,613 |
Percent of Total ASD Funding2% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew!
| Projects42 |
Funding$9,791,270 |
Percent of Total ASD Funding3% |
2010 IACC Strategic Plan Objectives4.L.A 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. | 1110 |
Funding$1,168,146 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan Objectives4.L.B 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. | Projects2 |
Funding$132,263 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects7 |
Funding$1,061,222 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan Objectives | Projects59 |
Funding$15,560,011 (25%) |
Percent of Total ASD Funding5% |
2010 IACC Strategic Plan ObjectivesTotal Funding for Question 4 | Projects234 |
Funding$63,403,014 |
Percent of Total ASD Funding20% |
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 2009.
Question 5: Where can I turn for services?
2010 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan Objectives5.S.A 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. | Projects1 |
Funding$499,999 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects6 |
Funding$446,340 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan Objectives5.L.A 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. | Projects10 |
Funding$5,460,809 |
Percent of Total ASD Funding2% |
2010 IACC Strategic Plan Objectives5.L.B 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. | Projects5 |
Funding$103,722 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects6 |
Funding$132,494 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan Objectives | Projects8 |
Funding$2,004,687 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan ObjectivesTotal Funding for Question 5 | Projects36 |
Funding$8,648,050 |
Percent of Total ASD Funding3% |
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 2009.
Question 6: What does the future hold, particularly for adults?
2010 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan ObjectivesNew! | Projects1 |
Funding$20,000 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew! | Projects2 |
Funding$509,965 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects2 |
Funding$718,290 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan Objectives | Projects2 |
Funding$159,444 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesTotal Funding for Question 6 | Projects7 |
Funding$1,407,699 |
Percent of Total ASD 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 2009.
Question 7: What other infrastructure and surveillance needs must be met?
2010 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan Objectives7.A 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. | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan Objectives7.B Conduct an annual "State of the States" assessment of existing state programs and supports for people and families living with ASD by 2009. IACC Recommended Budget: $300,000 each year. | Projects1 |
Funding$7,061 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan Objectives7.C 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. | Projects2 |
Funding$1,665,180 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan Objectives7.D 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 developing fibroblast repositories to produce pluripotent stem cells. Protocols should be put into place to expand the capacities of ongoing large-scale children's studies to collect and store additional biomaterials, promoting detection of biological signatures. IACC Recommended Budget for establishing biobanks by 2011: $10,500,000 over 2 years. IACC Recommended Budget for maintaining biobanks: $22,200,000 over 5 years. | Projects2 |
Funding$436,815 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects2 |
Funding$330,662 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan ObjectivesNew! | Projects2 |
Funding$1,932,996 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects15 |
Funding$6,715,815 |
Percent of Total ASD Funding2% |
2010 IACC Strategic Plan ObjectivesNew! | Projects11 |
Funding$494,449 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects7 |
Funding$2,527,472 |
Percent of Total ASD Funding1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects2 |
Funding$699,304 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2010 IACC Strategic Plan Objectives | Projects2 |
Funding$1,000,000 |
Percent of Total ASD Funding<1% |
2010 IACC Strategic Plan ObjectivesTotal Funding for Question 7 | Projects46 |
Funding$15,809,755 |
Percent of Total ASD Funding5% |
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 2009.
Other – Not specific to IACC Strategic Plan questions
IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan ObjectivesOther | Projects31 |
Funding$17,126,749 (100%) |
Percent of Total ASD Funding5% |
Grand Total
IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2010 IACC Strategic Plan ObjectivesTotal ASD Funding for 2009 | Projects995 |
Funding$314,385,374 |
Percent of Total ASD Funding100% |
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 2009.
References
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 as to the potential cost of conducting the recommended research. The IACC's role in research is advisory. The committee does not have its own research budget to conduct or support research.
2 When Question 7 was added to the IACC Strategic Plan in 2010, several ongoing projects were moved from other questions' objectives for a better fit within Question 7.