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Portfolio Analysis Cover 2013
Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
2013
ASD Research Funders and Funding in 2013

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.

Agencies and Organizations Included in the 2013 IACC Portfolio Analysis
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).

Graph of private versus federal autism research funding.  Private had about 72 million dollars and federal was about 232 million.

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.
Bar Graph of combined federal and private autism research funding.

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.

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

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.

2013 ASD Research Funding by Agency/Organization
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.

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.

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.

Research Funders

 
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