ASD Research Funders and Funding in 2016

Who funded ASD research in 2016?

Nine federal agencies and nine private funders provided their autism research funding information for this analysis. These 18 agencies and organizations are listed in Table 1. There were no new agencies or organizations added for the 2016 ASD research portfolio. Some agencies and organizations included in previous years’ analyses did not have projects to report in 2016 or chose not to participate in this year’s analysis. Brief summaries of the mission areas for each agency and organization that contributed to the 2016 Portfolio Analysis can be found in Appendix A of this report.

Federal Agencies	Private Organizations
Federal Agencies Administration for Community Living (ACL) Agency for Healthcare Research and Quality (AHRQ) Centers for Disease Control and Prevention (CDC) Department of Defense – Army (DoD – Army) 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) New England Center for Children (NECC) Organization for Autism Research (OAR) Patient-Centered Outcomes Research Institute (PCORI) Simons Foundation (SF)

Table 1. Projects from nine Federal agencies and nine private organizations were included in the 2016 IACC ASD Research Portfolio Analysis Report.

How much ASD research was funded in 2016?

Combined, the estimated federal and private investment in ASD research in 2016 was $364,435,254. The overall funding for autism research increased by $14.1 million from 2015 to 2016. However, the relative proportions contributed by federal and private funders during this period were relatively unchanged from the previous year. In 2016, the federal government provided $291.7 million in ASD research funding and accounted for 80% of overall funding. Private organizations provided $72.7 million in funding, which accounted for 20% of the total funding in 2016 (Figure 4).

Figure 4. In 2016, 80% of ASD research was provided by federal sources, while 20% of funding was provided by private organizations.

What funding trends were observed?

• ASD research funding increased from 2015-2016. In 2015, combined federal and private investment in ASD research was $342.7 million. In 2016, the combined federal and private funding was $364.4 million, an increase of 6.3% over one year (Figure 5).
• Federal investment in ASD research increased 5.1% in 2016 ($291.7 million) from 2015 ($277.6 million).
• The amount of private investment in ASD research reported in 2016 ($72.7 million) was significantly higher, 11.7%, than in 2015 ($65.1 million).
• As stated in previous IACC 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 during those years, resulting in a high of $408.6 million in reported funding in 2010. In 2011, levels significantly decreased in comparison to 2010, but have been slowly rising over recent years. Funding in 2016 was slightly higher than the 2010 non-ARRA funding level and is the highest year of funding since 2010.

Figure 5. This figure illustrates levels of autism research funding from combined federal and private sources during 2008-2016 based on data collected for the IACC Portfolio Analysis of those years.

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

Figure 6 shows the distribution of autism research projects across the U.S. funded by both federal agencies and private organizations in 2016. 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.

The U.S. institutions that received the largest amounts of funding are University of California at Davis, Yale University, and University of California at Los Angeles. University of California at Davis has many investigators collaborating on major research initiatives such as the Baby Siblings Consortium, SPARK, and the Childhood Autism Risks from Genetics and Environment (CHARGE) study. It is also the site of the UC Davis Mind Institute and the UC Davis Center for Children’s Environmental Health and Disease Prevention (CCEH). Yale University is similar in that researchers at the institution are collaborating on several large multisite research projects, such as the Simons Simplex Collection (SSC) and the Autism Biomarkers Consortium for Clinical Trials. University of California at Los Angeles has investigators involved in the Autism Intervention Research Network on Behavioral Health (AIR-B network) and the Health Care Transitions Research Network (HCT-RN) for youth and young adults with ASD. Many of the other institutions with significant amounts of funding are involved in large genetic, biological, and environmental research networks in an effort to increase the study size and quality of the research being studied. Table 2 provides some additional information about the institutions and states that had the largest number of projects in 2016.

Figure 6. A map of the U.S. and Canada displaying the distribution of autism-related research projects in 2016 funded by federal agencies and private organizations.

Which U.S. institutions received the most autism research funding in 2016?

Institution	Funding	Project Count
Institution University of California, Davis	Funding $18,355,969	Project Count 54
Institution Yale University	Funding $15,308,925	Project Count 41
Institution University of California, Los Angeles	Funding $15,010,953	Project Count 44
Institution National Institutes of Health - Intramural Research Program	Funding $13,085,768	Project Count 12
Institution University of North Carolina, Chapel Hill	Funding $10,481,404	Project Count 34
Institution New York Genome Center, Inc.	Funding $9,824,025	Project Count 1
Institution Boston Children’s Hospital	Funding $9,269,892	Project Count 22
Institution Stanford University	Funding $8,620,483	Project Count 30
Institution University of California, San Diego	Funding $8,337,640	Project Count 28
Institution Massachusetts Institute of Technology	Funding $6,809,803	Project Count 13

Which states had the highest levels of funding in 2016?

Institution	Funding	Project Count
Institution California	Funding $71,970,228	Project Count 261
Institution New York	Funding $46,215,102	Project Count 133
Institution Massachusetts	Funding $44,289,321	Project Count 202
Institution Maryland	Funding $33,126,572	Project Count 62
Institution Pennsylvania	Funding $18,526,114	Project Count 77
Institution North Carolina	Funding $18,014,641	Project Count 61
Institution Connecticut	Funding $16,254,794	Project Count 46
Institution Georgia	Funding $11,821,168	Project Count 50
Institution Florida	Funding $9,867,385	Project Count 32
Institution Texas	Funding $9,603,843	Project Count 40

Table 2. Institutions and states with the most ASD-related research funding from federal and private sources in 2016.

Which countries received ASD research funding from U.S. funders?

While majority of the U.S. ASD research funding is awarded to investigators at U.S. institutions, several of the agencies and organizations from which IACC/OARC collects information invest in ASD research internationally. In 2016, 19 countries outside the U.S. received funding for ASD research from agencies and organizations represented in the Portfolio Analysis, with total funding of international projects amounting to $3.6 million and 50 projects were funded. Overall, 1% of total funding went towards institutions outside of the U.S. and 3.7% of all projects were at international institutions. While a few federal agencies funded projects at international institutions, most of the international research was supported by private organizations (Table 3). The countries that received the largest portion of international funding were Canada and the United Kingdom (Table 4).

Funder
Funder New England Center for Children
Funder Brain & Behavior Research Foundation
Funder Autism Speaks
Funder National Institutes of Health
Funder Autism Science Foundation
Funder Simons Foundation
Funder Department of Defense – Army

Table 3. List of funders who provided funding for international ASD research in 2016.

Country	Funding	Project Count
Country Australia	Funding $239,576	Project Count 4
Country Austria	Funding $99,730	Project Count 1
Country Belgium	Funding $117,500	Project Count 1
Country Canada	Funding $1,910,931	Project Count 20
Country China	Funding $5,000	Project Count 1
Country France	Funding $52,500	Project Count 2
Country Germany	Funding $86,948	Project Count 2
Country Ireland	Funding $0	Project Count 1
Country Israel	Funding $0	Project Count 1
Country Italy	Funding $102,436	Project Count 2
Country Netherlands	Funding $125,000	Project Count 1
Country Pakistan	Funding $250,000	Project Count 1
Country Portugal	Funding $5,000	Project Count 1
Country Spain	Funding $32,158	Project Count 1
Country Switzerland	Funding $0	Project Count 2
Country Taiwan	Funding $70,000	Project Count 1
Country Turkey	Funding $70,000	Project Count 1
Country United Arab Emirates	Funding $1,830	Project Count 1
Country United Kingdom	Funding $414,187	Project Count 6
Country Total	Funding $3,582,796	Project Count 50

Table 4. List of countries that received funding from U.S. federal agencies or private organizations to support ASD research.

How much ASD research funding did each funder provide in 2016?

The 18 agencies and organizations that participated in the 2016 Portfolio Analysis supported 1,360 ASD research projects totaling $364,435,254 (Table 5).

The National Institutes of Health (NIH) was the leading federal (and overall) funder of ASD research in 2016 with a total of $234.4 million, funding 547 projects. NIH funding for autism research increased by $17.7 million from 2015 to 2016. The next largest federal funder was the Department of Education (ED), with $19.6 million, followed by the Centers for Disease Control and Prevention (CDC), with $15.4 million. ED’s research funding decreased by $6.7 million, due to several large, ongoing projects that received large amounts of funding in 2015 but did not receive an increment in 2016. The CDC’s funding stayed relatively the same from 2015 to 2016. As in previous years, the Simons Foundation and Autism Speaks were the largest private funders of ASD research in 2016, with investments of $61.8 million and $6.7 million, respectively. The percentage of overall ASD research funding provided by each agency is depicted in Figure 7.

Funding Agency/Organization	2016 Funding	Project Count
Funding Agency/Organization National Institutes of Health (NIH)	Funding $234,392,406	Project Count 547*
Funding Agency/Organization Simons Foundation (SF)	Funding $61,754,800	Project Count 283
Funding Agency/Organization Department of Education (ED)	Funding $19,627,374	Project Count 75
Funding Agency/Organization Centers for Disease Control & Prevention (CDC)	Funding $15,390,203	Project Count 28
Funding Agency/Organization Health Resources and Services Administration (HRSA)	Funding $8,576,199**	Project Count 30
Funding Agency/Organization Department of Defense – Army (DoD-Army)	Funding $5,533,865	Project Count 59
Funding Agency/Organization Autism Speaks (AS)	Funding $6,745,989	Project Count 90
Funding Agency/Organization National Science Foundation (NSF)	Funding $4,488,826	Project Count 44
Funding Agency/Organization Administration for Community Living (ACL)	Funding $1,798,164	Project Count 7
Funding Agency/Organization Brain & Behavior Research Foundation (BBRF)	Funding $1,688,387	Project Count 56
Funding Agency/Organization Patient-Centered Outcomes Research Institute (PCORI)	Funding $539,719	Project Count 7
Funding Agency/Organization Centers for Autism and Related Disorders (CARD)	Funding $690,000	Project Count 9
Funding Agency/Organization Autism Science Foundation (ASF)	Funding $474,072	Project Count 30
Funding Agency/Organization Environmental Protection Agency (EPA)	Funding $420,364	Project Count 1
Funding Agency/Organization Autism Research Institute (ARI)	Funding $347,650	Project Count 8
Funding Agency/Organization New England Center for Children (NECC)	Funding $259,060	Project Count 64
Funding Agency/Organization Organization for Autism Research (OAR)	Funding $199,803	Project Count 19
Funding Agency/Organization Agency for Healthcare Research & Quality (AHRQ)	Funding $153,695	Project Count 4
Funding Agency/Organization Grand Total	Funding $364,435,254	Project Count 1,360

*The NIH project number shown reflects unique NIH projects. Portions of a project 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 portion is counted as a separate project.

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

Table 5. The table lists the total funding and number of projects provided by the 18 federal agencies and private organizations included in the Portfolio Analysis for 2016. Together, the agencies and organizations funded 1,360 projects, representing an overall investment of $364,435,254.

Figure 7. The figure illustrates the percentage of total ASD research funding contributed by the 18 federal agencies and private organizations included in the 2016 portfolio. NIH provided the largest proportion of funding (64.3%), while Simons Foundation provided the largest private investment (16.9%).

Summary of ASD Research Funding in 2016

The recently published 2016-2017 IACC Strategic Plan calls for a doubling of the 2015 ASD research budget to $685 million by 2020. To accomplish this goal, the Committee recommended a nearly 15% annual increase in ASD research funding. Since the 2014-2015 Portfolio Analysis Report, funding for autism research increased from $342.7 million to $364.4 million in 2016, representing a 6.3% increase in funding. While this did not achieve the 2016-2017 IACC Strategic Plan recommended funding amount of $394 million, ASD research did experience a substantial growth in funding for 2016 (Figure 8).

Over the nine-year span from 2008-2016, funding increased by 64%, suggesting a continued overall growth in support of ASD research. However, over the period from 2008 to 2016, ASD funding has grown, while undergoing some fluctuations from one year to the next (Figure 5). Autism research reached a peak in funding (including ARRA funds) in 2010 and then experienced lower, but overall increasing levels of funding over the next few years. In 2016, the ASD research portfolio was funded at the highest level since 2010, but still well below the level that would be required to meet the 2016-2017 IACC Strategic Plan budget recommendation. In future years, funding trends will continue to be monitored to determine progress toward meeting the IACC’s budget recommendation.

Figure 8. The IACC recommends a doubling of the combined federal and private ASD research budget to $685 million by 2020. Based on 2015 and 2016 funding amounts, ASD research investment is lagging behind IACC budget recommendations.