Who funded ASD research in 2013?

Ten Federal agencies and eight private funders provided their autism funding data for this analysis. These 18 agencies and organizations are listed in Table 1. The Patient-Centered Outcomes Research Institute (PCORI) is a new private funder submitting ASD research to the IACC Portfolio Analysis. PCORI was authorized by the Patient Protection and Affordable Care Act of 2010 to fund comparative clinical effectiveness research to help inform healthcare decision-making. Some funders included in previous years' Portfolio Analysis Reports either did not have projects to report in 2013 or did not choose to participate in this year’s analysis. Brief summaries of the mission areas and portfolios of the different Federal agencies and private organizations included in this analysis appear in Appendix A.

Federal Agencies

Private Organizations

Federal Agencies Administration for Children and Families (ACF) Agency for Healthcare Research and Quality (AHRQ) Centers for Disease Control and Prevention (CDC) Centers for Medicare & Medicaid Services (CMS) Department of Defense (DoD)* Air Force (AF) Autism Research Program (ARP) Department of Education (ED) Environmental Protection Agency (EPA) Health Resources and Services Administration (HRSA) National Institutes of Health (NIH) National Science Foundation (NSF)

Private Organizations Autism Research Institute (ARI) Autism Science Foundation (ASF) Autism Speaks (AS) Brain & Behavior Research Foundation (BBRF) Center for Autism and Related Disorders (CARD) Organization for Autism Research (OAR) Patient-Centered Outcomes Research Institute (PCORI) Simons Foundation (SF)

* The DoD Autism Research Program and Air Force reported as two separate entities for the purpose of this Portfolio Analysis.

Table 1. Projects from ten Federal agencies and eight private organizations were included in the 2013 IACC Autism Spectrum Disorder Research Portfolio Analysis Report.

How much ASD research was funded in 2013?

Combined, the estimated Federal and private investment in ASD research in 2013 was $305,580,132. While overall funding for autism research decreased by $26 million from 2012 to 2013, the proportion of Federal and private funding remained relatively constant over this period, with the proportion only shifting by roughly 2% from Federal to private since 2012. In 2013, the Federal government provided 76% ($232.6 million) and private organizations provided 24% ($72.9 million) of the total funding for ASD research (Figure 3).

Figure 3. In 2013, 76% of ASD research was provided by Federal sources, while 24% of funding was provided by private organizations.

What funding trends were observed?

• Combined Federal and private investment in ASD research decreased from 2012 ($331.9 million) to 2013 ($305.6 million) (Figure 4).
• Private investment in ASD research was higher in 2013 ($72.9 million) than in previous years ($66.8 million in 2011 and $71.8 million in 2012).
• The amount of Federal investment in autism research reported in 2013 ($232.6 million) was lower than the amount reported in 2012 ($260.1 million), and slightly lower than the 2011 level ($233.1 million).
• As stated in previous Portfolio Analysis Reports, the American Recovery and Reinvestment Act (ARRA), which provided an additional $63.9 million in 2009 and $59.9 million in 2010 to support autism research projects, created a temporary increase in total autism research funding levels those years.
• One factor that may have contributed to the decrease in Federal funding for ASD research from 2012 to 2013 is that the overall budget of the National Institutes of Health (NIH), the largest Federal funder of ASD research, was reduced from $30.8 billion in 2012 to $29.1 billion in 2013.
• While one new private funder (the Patient-Centered Outcomes Research Institute) was added to the 2013 Portfolio Analysis, the new funder contributed only one project in 2013, so the impact on the total funding was relatively small.

Figure 4. This figure illustrates levels of autism research funding from combined Federal and private sources during 2008-2013 based on data collected for the IACC Portfolio Analysis of those years.

Where is research being funded in the U.S.?

Figure 5 shows the distribution of autism research projects across the U.S. funded by both Federal agencies and private organizations in 2013. The map shows that research is concentrated along the east and west coasts of the U.S. and in major metropolitan areas or areas with large universities in the middle portion of the country. Table 2 also provides some additional information about the institutions and states that had a large number of projects in 2013.

Figure 5. A map of the U.S. and Canada displaying the distribution of autism-related research projects funded by Federal agencies and private organizations.

Which U.S. institutions received the most autism research funding in 2013?

Institution	2013 Funding	2013 Project Count
Institution National Institutes of Health – Intramural Research Program	2013 Funding $21,775,796	2013 Project Count 17
Institution University of California, Los Angeles	2013 Funding $17,361,222	2013 Project Count 45
Institution University of California, Davis	2013 Funding $16,603,446	2013 Project Count 54
Institution University of North Carolina, Chapel Hill	2013 Funding $13,905,807	2013 Project Count 38
Institution Yale University	2013 Funding $9,141,660	2013 Project Count 36
Institution Columbia University	2013 Funding $8,566,328	2013 Project Count 22
Institution Massachusetts Institute of Technology	2013 Funding $7,758,566	2013 Project Count 14
Institution Boston Children’s Hospital	2013 Funding $6,969,353	2013 Project Count 23
Institution Stanford University	2013 Funding $6,483,950	2013 Project Count 31
Institution University of California, San Diego	2013 Funding $5,697,893	2013 Project Count 18

Which states received the most autism research funding in 2013?

Institution	2013 Funding	2013 Project Count
Institution California	2013 Funding $64,365,170	2013 Project Count 261
Institution Massachusetts	2013 Funding $36,163,166	2013 Project Count 127
Institution New York	2013 Funding $31,419,366	2013 Project Count 132
Institution North Carolina	2013 Funding $17,636,048	2013 Project Count 63
Institution Connecticut	2013 Funding $15,289,885	2013 Project Count 51

Table 2. Institutions and states with the most ASD-related research funding from Federal and private sources in 2013.

How much ASD research funding did each funder provide in 2013?

Each of the 18 stakeholders, agencies, and organizations that participated in the 2013 Portfolio Analysis had ASD research projects that were active in 2013. In all, 1,279 projects were funded in 2013, totaling $305,580,132 (Table 3).

The National Institutes of Health (NIH) was the leading Federal (and overall) contributor of funding for ASD research in 2013 with a total of $175.9 million, funding 410 projects. NIH funding for autism research decreased by $14.7 million from 2012 to 2013; the agency experienced a $1.7 billion reduction in overall budget during the same period. The next largest Federal funder in autism research was the Department of Education, with $22.7 million, followed by the Centers for Disease Control and Prevention (CDC), with $16.1 million. The Department of Education experienced a $6.8 million decrease in funding from 2012 to 2013, while CDC funding in autism research stayed the same. As in previous years, the Simons Foundation and Autism Speaks were the largest private funders of ASD research in 2013, with investments of $50.4 million and $18.6 million, respectively. The percentage of overall ASD research funding provided by each agency is depicted in Figure 6.

Funding Agency/Organization	Project Count	2013 Funding
Funding Agency/Organization National Institutes of Health (NIH)	Project Count 410*	2013 Funding $175,908,374
Funding Agency/Organization Simons Foundation (SF)	Project Count 267	2013 Funding $50,445,045
Funding Agency/Organization Department of Education (ED)	Project Count 130	2013 Funding $22,716,258
Funding Agency/Organization Centers for Disease Control & Prevention (CDC)	Project Count 26	2013 Funding $16,077,048
Funding Agency/Organization Autism Speaks (AS)	Project Count 183	2013 Funding $18,632,127
Funding Agency/Organization Health Resources and Services Administration (HRSA)	Project Count 25	2013 Funding $7,201,186**
Funding Agency/Organization Department of Defense – Army (DoD-Army)	Project Count 49	2013 Funding $4,514,151
Funding Agency/Organization National Science Foundation (NSF)	Project Count 38	2013 Funding $2,349,449
Funding Agency/Organization Patient-Centered Outcomes Research Institute (PCORI)	Project Count 1	2013 Funding $1,757,884
Funding Agency/Organization Environmental Protection Agency (EPA)	Project Count 1	2013 Funding $1,660,178
Funding Agency/Organization Agency for Healthcare Research and Quality (AHRQ)	Project Count 6	2013 Funding $1,233,747**
Funding Agency/Organization Department of Defense – Air Force (DoD-AF)	Project Count 1	2013 Funding $966,000
Funding Agency/Organization Centers for Autism and Related Disorders (CARD)	Project Count 19	2013 Funding $602,300
Funding Agency/Organization Brain & Behavior Research Foundation (BBRF)	Project Count 49	2013 Funding $562,986
Funding Agency/Organization Autism Science Foundation (ASF)	Project Count 28	2013 Funding $389,000
Funding Agency/Organization Organization for Autism Research (OAR)	Project Count 20	2013 Funding $340,235
Funding Agency/Organization Autism Research Institute (ARI)	Project Count 24	2013 Funding $210,669
Funding Agency/Organization Centers for Medicare & Medicaid Services (CMS)	Project Count 1	2013 Funding $13,495
Funding Agency/Organization Administration for Children & Families (ACF)	Project Count 1	2013 Funding $0
Funding Agency/Organization Total	Project Count 1,279	2013 Funding $305,580,132

*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 RePORT database, where each co-fund is counted as a separate project.

**The annual funding amount for some projects reported by AHRQ and HRSA are prorated estimates for the autism-related portion of a larger project./p>

Table 3. The table lists the total funding and number of projects provided by the 18 Federal agencies and private organizations included in the 2013 Portfolio Analysis. Together, the agencies and organizations funded 1,279 projects in 2013, representing an overall investment of $305,580,132.

Figure 6. The figure illustrates the percentage of total ASD research funding contributed by the 18 Federal agencies and private organizations included in the 2013 Portfolio Analysis. NIH provided the largest proportion of funding (57.6%), while Simons Foundation made the largest contribution of the private organizations (16.5%).

Summary of ASD Research Funding in 2013

As outlined in this section, numerous Federal and private funders invested in ASD research conducted across the country in 2013. Funding for the overall autism research portfolio decreased 8.0% from 2012 to 2013, with Federal funding falling 10.6% and private funding growing 1.6%. Over the six-year span from 2008-2013, funding increased by 38%, suggesting continued overall growth in support of ASD research.