Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
The 2016 IACC ASD Research Portfolio Analysis Report represents the ninth year of data collected and the seventh comprehensive report of U.S. ASD research funding across both the federal and private sectors. It is also the first analysis to measure research progress against the 23 new objectives from the 2016-2017 IACC Strategic Plan. Project information was collected from 18 federal and private funders; the diverse missions of the different funders are reflected in the ASD research portfolio across the seven questions of the Strategic Plan. In 2016, federal agencies funded 80% of ASD research while private organizations contributed nearly 20% of funding, similar to previous years. Among the participating funders, National Institutes of Health continued to contribute the largest amount of federal funding toward autism research, and the Simons Foundation was the largest private funder.
Overall, funding for ASD research among both federal and private funders totaled $364.4 million and spanned 1,360 projects in 2016. With nine years of ASD research funding data available, it was possible to continue analyzing funding trends, enabling meaningful observations about the long-term progress in ASD research over the period from 2008-2016. Over these nine years, autism research showed an overall upward trend in funding, increasing by 64.3% since 2008.
One of the key aims of the Portfolio Analysis Report is to evaluate the progress made in addressing the research priorities as outlined in the Strategic Plan objectives. As this was the first year aligning ASD research projects with the new Strategic Plan objectives, 2016 will be the starting point to assessing progress on current research priorities within the objectives. However, the Strategic Plan question areas have remained unchanged since in their inception in 2008. Therefore, we are able to continue to evaluate the progress in the question research areas from 2008 to 2016. Each Strategic Plan question has sustained similar proportions in funding throughout the years. In 2016, funding toward Question 2 (Underlying Biology) continued to be the largest research area funded. Question 3 (Risk Factors) and Question 4 (Treatments and Interventions) had the next largest amounts of funding, as in previous years. Question 7 (Surveillance and Infrastructure) and Question 1 (Screening and Diagnosis) each comprised nearly one-tenth of the total funding. Lastly, Question 5 (Services) and Question 6 (Lifespan Issues) had the smallest amounts of funding, similar to years prior. It is worth noting that every objective in the 2016-2017 Strategic Plan had associated projects and funding in 2016, indicating that the vast majority of priority areas identified by the IACC in the Strategic Plan objectives were also identified as priority areas by federal and private research funders, though some areas still have much room for growth.
As in the previous IACC ASD Portfolio Analysis Reports, additional analyses on the geographical distribution of autism research funding, investments in long-term (ongoing) research compared to newly funded projects, and the types of research funded by different agencies and organizations were included in the portfolio analysis to provide more detailed information for the Committee and community stakeholders on the autism research landscape. For the first time, the Portfolio Analysis Report provided information on international ASD research supported by U.S. funders. In 2016, 1% of total funding went towards research in 19 countries outside the U.S., amounting to $3.5 million and 49 projects. Also, when examining investments in long-term research compared to newly funded projects among the Strategic Plan questions, there was a significant increase in newly funded research on the lifespan (Question 6). Within Question 6, 68% of projects were funded for the first time in 2016, demonstrating growth in investments in this research area.
This annual IACC ASD Research Portfolio Analysis Report assists the Committee with carrying out its charge to monitor autism activities and to inform the process of updating the IACC Strategic Plan for ASD Research. Future portfolio analyses using the 2016-2017 IACC Strategic Plan’s set of 23 objectives will continue to serve as a resource for the Committee, funders, and the broader ASD community to monitor progress, identify knowledge gaps, recognize emerging trends and new opportunities, and guide future research investments to better meet the needs of families and individuals affected by ASD.