Request for Information (RFI) Solicited Public Input on ASD Research Priorities December 19, 2007 – January 4, 2008
NIH issued the RFI: Research Priorities for the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorders (ASD), NOT-MH-08-003, to seek input from ASD stakeholders about high-priority research questions as a first step in receiving broad input at the beginning stages of strategic plan development.
Dissemination of the RFI
- The RFI was posted in the NIH Guide on December 19, 2007; responses were accepted through January 4, 2008.
- The electronic link to the RFI was sent to a wide range of advocacy, research, and professional organizations, IACC members, the IACC strategic planning workgroup, the NIH autism listserv, and an email distribution list from the NIMH Office of Constituency Relations and Public Liaison.
- Autism societies and advocacy organization were asked to post the RFI on their websites or otherwise disseminate the RFI among their membership.
A total of 542 responses were received, coming from nearly every U.S. State and from foreign countries including Canada, England, Norway, Argentina, and France. Individual respondents included parents or relatives of a child with an ASD, including military families; individuals self-identified with an ASD; professionals involved in ASD care, educators, and school staff; and researchers in ASD and other fields. Examples of organizations that responded included state autism societies; state or local departments of health, mental health, and public health; university departments; disease-specific foundations; advocacy organizations; and professional organizations. Respondents shared many personal stories and expressed a great diversity of opinions. The Treatment domain received the most responses and in general, the comments strongly supported the need for more research on ASD.
Procedure for Summarizing Reponses
For each response, a professional science writer identified and excerpted recommendations for each of the following four domains: Biology, Treatment, Diagnosis, and Risk Factors. Minor copyedits were made to facilitate ease of reading. There was no attempt to quantify responses or estimate the frequency of a particular recommendation. The overall intent was to include all ideas in a broad listing of recommendations, loosely organized into subtopics.