2008 IACC Autism Spectrum Disorder Research Portfolio Analysis Report
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- Introduction
- Who funded ASD research in 2008?
- What was the basic breakdown of funding?
- What ASD research was done?
- How did the research align with the objectives in the IACC Strategic Plan?
- Conclusion
Introduction
In 2009, the Interagency Autism Coordinating Committee (IACC) conducted a comprehensive analysis of the autism spectrum disorder (ASD) research portfolios of major Federal agencies and private organizations. The analysis was conducted to better inform the committee and interested public about the funding landscape for ASD research and how well this matched the new IACC Strategic Plan for ASD research. In so doing, the portfolio analysis also can be used by Federal agencies and private research organizations to help guide future funding priorities by highlighting current gaps and opportunities in ASD research as well as serving as a baseline to assess research progress.
Who funded ASD research in 2008?
The Office of Autism Research Coordination (OARC), on behalf of the IACC, asked Federal agencies and private organizations for information about the ASD-related research grants that they supported in 2008, including the annual budget of each project and its relevance to the six questions of the 2009 IACC Strategic Plan for ASD Research (e.g., When Should I Be Concerned? How Can I Understand What Is Happening? What Caused This To Happen and Can It Be Prevented? Which Treatments and Interventions Will Help? Where Can I Turn For Services? What Does the Future Hold?). Nineteen ASD stakeholders were approached for funding information (Figure 1). Of those, 13 reported that they had funded ASD research in 2008. The remaining six were funding service programs or other non-research activities, rather than ASD research Table 1 lists the 19 Federal agencies and private organizations approached for the portfolio analysis and notes whether or not each stakeholder funded ASD research in 2008.
Organizations Included in the 2008 IACC Portfolio Analysis of ASD Research Funding
| Federal Agencies | Private Organizations |
|---|---|
|
|
* Indicates organizations that reported that they had not funded ASD research in 2008.
Table 1. The table lists the nineteen Federal agencies and private organizations included in the 2008 analysis of ASD research funding and indicates whether the organization funded ASD research during the year. Six of the eleven Federal agencies that were approached for the portfolio analysis reported funding ASD research, as did seven of the eight private organizations.
What was the basic breakdown of funding?
The 13 stakeholders that funded ASD research in 2008 contributed a total of $222,215,342 across 745 projects (Table 2). The average funding per project varied greatly between organizations, ranging from $24,643 to $2,030,264, with some organizations choosing to support a few large projects while others distributed funds across several smaller projects. The National Institutes of Health (NIH) contributed the largest amount of research funding in 2008, spending $117,969,770 on 340 projects, followed by the Simons Foundation with 77 projects totaling $42,985,684. Autism Speaks ranked third with $30,828,116 spent across 200 projects. In the split between Federal and private funding, the Federal government supported about two-thirds of the total research budget, while private organizations funded the remaining one-third (Figure 1).
2008 ASD Research Funding by Funding Agency/Organization
| Funding Agency/Organization* | Number of Projects | Average Funding Per Project | Total Funding |
|---|---|---|---|
| National Institutes of Health | 340 | $346,970 | $117,969,770 |
| Simons Foundation | 77 | $558,256 | $42,985,684 |
| Autism Speaks | 200 | $154,141 | $30,828,116 |
| Centers for Disease Control and Prevention | 27 | $682,855 | $15,022,812 |
| Health Resources and Services Administration | 3 | $2,030,264 | $6,090,792 |
| Department of Education | 7 | $491,292 | $3,439,047 |
| Autism Consortium | 22 | $100,683 | $2,215,017 |
| Department of Defense | 8 | $147,223 | $1,177,781 |
| Center for Autism and Related Disorders | 26 | $31,369 | $815,581 |
| Organization for Autism Research | 16 | $45,625 | $730,000 |
| Autism Research Institute | 13 | $40,085 | $521,099 |
| Southwest Autism Research & Resource Center | 5 | $79,000 | $395,000 |
| Centers for Medicare and Medicaid Services | 1 | $24,643 | $24,643 |
| Grand Total | 745 | $300,291 | $222,215,342 |
*Research projects included are those identified by the agencies and organizations as funded in the most recent 12 months for which data were available. The NIH project number shown reflects unique NIH projects. Projects funded by more than one NIH institute ("co-funds") were combined and only counted as a single project. This approach differs from that used in the NIH RePORTER system, where each co-fund is counted as a separate project.
Table 2. The table lists the total funding provided by the agencies and organizations included in the portfolio analysis, the number of projects funded, and the average funding per project. Together, the agencies and organizations funded 745 projects at an average of $300,291 per project.
Comparison of Federal versus Private Funding for ASD Research in 2008
Figure 1. Sixty-five percent of the $222 million spent on ASD research in 2008 came from Federal sources, while thirty-five percent of funding came from private organizations.
What ASD research was done?
To better understand what areas of research were funded in 2008, projects were mapped to the corresponding questions in the 2009 Strategic Plan. Figure 2 illustrates the breakdown of the research funding according to the Plan's six questions related to diagnosis, biology, risk and protective factors, treatments, services, and lifespan issues. Identifying how current research investments correspond to the Plan will help to understand the current main areas of focus in the field, as well as areas that are currently underdeveloped. In 2008, the largest proportion of research funding (37%) related to the question of ASD causation: "What Caused This to Happen and Can It Be Prevented?" Research on treatments and interventions received the next largest investment with 24% of total funding. Understanding the underlying biology of ASD received 18% of funding and research addressing diagnosis received 13%. The two areas of the Plan that received the least amount of funding related to services research (1%) and research on lifespan issues ("What Does the Future Hold"), which includes transitioning into adulthood (5%).
2008 ASD Research Funding by Topic Area (Defined as Questions in the 2009 Strategic Plan)
Figure 2. In 2008, the largest proportion of research funding (thirty-seven percent) was devoted to risk factors for ASD reflected in the question: "What Caused This to Happen and Can It Be Prevented?" Twenty-four percent of the research addressed interventions and treatments, eighteen percent related to the underlying biology of ASD, and thirteen percent related to diagnosis. Research on services and lifespan issues received the smallest proportion of funding.
How did the research align with the objectives in the IACC Strategic Plan?
After assessing the distribution of research funding across the Strategic Plan questions, the IACC analyzed how well the 2008 research addressed the specific goals outlined in the Plan's 40 research objectives. Each question in the Plan has several long and short-term objectives calling for specific research projects with a goal date and an estimate of the budget required to accomplish the goal. For example, the first objective in Question 1: "When Should I Be Concerned?" calls for the development of "at least one efficient diagnostic instrument that is valid in diverse populations for use in large-scale studies by 2011," with a recommended budget of $5,300,000 over two years.
Figure 3 illustrates how much of the 2008 funding addresses specific objectives in the Plan. Each Plan question is represented by a bar; the blue portion illustrates the amount of funding within the question that went towards research aligned with one of the objectives. The red portion represents research that relates to the topic area of the question (e.g., diagnosis, biology, risk factors, etc.), but is not specific to any of the objectives. As an example, a research project studying how children with ASD process the visual information that accompanies speech has implications for diagnosis, however it does not relate to a specific objective in Question 1. This would be classified as Question 1 research "not specific to objectives."
2008 ASD Research Funding by Strategic Plan Question: Specific versus Not Specific to Research Objectives
Figure 3. The bar chart shows the amount of ASD funding that aligned with objectives in the Strategic Plan. The blue sections represent research that fulfilled Plan objectives, while the red sections represent research within the question topic area that fell outside the specific projects called for in the objectives. Research related to Questions 3 and 6 – risk factors and lifespan issues – had the highest proportion of projects that aligned with objectives.
Of the six questions, Question 4 – which relates to issues over the lifespan – had the largest proportion of research aligned with an objective (95% of the total $9.8 million in funding). This was followed by Question 3 on risk factors, with 92% of the $82.8 million in research corresponding to an objective. Conversely, more than half of the funding devoted to Question 1: "When Should I Be Concerned?" and Question 2: "How Can I Understand What is Happening?" was for projects outside the focus of the objectives.
When examining only Federal funding, the distribution of objective-specific research is strikingly similar to that of the combined Federal and private funding (Figure 4). The vast majority of research related to Questions 3 and 6 is specific to Plan objectives, while Questions 1 and 2 show the opposite pattern.
2008 Federal Funding of ASD Research by Strategic Plan Question: Specific versus Not Specific to Research Objectives
Figure 4. Federal funding of ASD research in 2008 showed a similar pattern to overall funding – research related to risk factors and lifespan issues most closely aligned with the Plan objectives, while more than half of the research related to diagnosis and biology did not align with stated objectives.
Conclusion
The 2008 ASD research funding portfolio analysis is the first comprehensive review of ASD research funding across both the public and private sector and provides a valuable snapshot of the current funding landscape. This initial analysis will serve as the baseline for future analyses of ASD research funding to be conducted annually as part of the updating process for the IACC Strategic Plan for Autism Spectrum Disorder Research. Trends identified during the analysis can be used to address underfunded areas, identify new research opportunities and priorities, and guide the direction of future research.