The Combating Autism Act of 2006 mandated the reestablishment of the Interagency Autism Coordinating Committee (IACC) to coordinate all efforts concerning Autism Spectrum Disorder (ASD) across the Department of Health and Human Services (DHHS). IACC membership includes an individual with an ASD, representatives from several advocacy groups (Autism Speaks, Autism Society of America, SafeMinds), and officials from most of the federal agencies that deal with autism research or services (including Centers for Disease Control and Prevention, the Department of Education, the Centers for Medicare and Medicaid Services, the Office on Disability, Substance Abuse and Mental Health Services Administration, and five Institutes of the National Institutes of Health). One of the first tasks of the IACC is to develop a strategic plan for ASD research that will be updated yearly. The Strategic Plan for ASD research is an opportunity to take stock of recent progress, identify needs for new research, and plan for scientific initiatives that can be supported by either federal agencies, private foundations, or public-private partnerships.
The mission of the IACC Strategic Plan is to “focus, coordinate, and accelerate high quality research and scientific discovery in partnership with stakeholders to answer the urgent questions and needs of individuals on the autism spectrum and their families.” Toward this end the IACC received over 500 responses to a public request for information (RFI) published in December, 2007. In January, 2008 over 60 scientists, clinicians, and advocates participated in scientific workshops to identify research opportunities within the areas of: risk factors, biology, diagnosis, and treatment. Recently, the IACC held the first of a series of town hall meetings to gather additional public input.
An important part of the strategic planning effort has been the first comprehensive analysis of autism funding from both public and private sources. The NIH official funding commitment for ASD-related research in 2007 was approximately $127 million (http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/nih-initiatives/fy-2007-nih-asd-research-portfolio-summary-by-research-area.shtml). When combined with CDC, Department of Defense, Autism Speaks, and the Simons Foundation commitments, 2007 ASD-related research funding exceeded $188 million. How are these funds distributed by research area? While not every project fits into a single category, approximately 28% was dedicated to investigations of risk factors, 27% to biology, 17% to diagnosis, 14% to treatment, and 14% to other areas such as training and infrastructure. By matching research support across these various areas and across funding sources to the research needs highlighted in the strategic plan, the IACC will identify opportunities for new investments as well as for leveraging current support.
What specific research initiatives will be recommended by the Strategic Plan? The various ideas gathered from the response to the RFI, the research workshops, and various public meetings have been consolidated into roughly 30 initiatives. While this may seem like a daunting “to do” list, the initiatives have been organized around 6 general questions, questions that are commonly asked by individuals and families when facing the challenges of ASD:
- WHEN should I be concerned?
- HOW can I understand what is happening?
- WHAT caused this to happen and can this be prevented?
- WHICH treatments will help?
- WHERE can I turn for services?
- WHAT does the future hold?
To address each of these questions, the plan will include not only research opportunities, but short and long term objectives with metrics for evaluating progress and proposed budgetary requirements.
Science rarely progresses as expected. Most scientists recognize that some of the many important discoveries have been serendipitous, neither scripted nor planned. Nevertheless, the IACC believes that by beginning with consumer-focused questions and formulating objectives that reflect urgency and are accountable, the strategic plan will help facilitate breakthroughs in autism research. In addition, the IACC is committed to fostering collaboration, partnership, and scientific excellence to accelerate progress.
In addition to the IACC research strategic plan, the National Database for Autism Research (NDAR) will be a critical tool in fostering communication throughout the global ASD research community. NDAR will provide a common platform for research data to be shared among investigators, encouraging synergy, and accelerating research endeavors. Developed in 2007, NDAR will begin accepting data from the NIH Autism Centers of Excellence (ACE) awardees in the summer of 2008. The ACE program awards represent a joint venture between five NIH institutes, supporting 6 centers and 5 networks to coordinate autism research.
The challenges that ASD present to society as a whole, and affected individuals and families specifically, demand a rapid and coordinated response. The vision for the Strategic Plan is that it will, “accelerate and inspire research that will profoundly improve the health and well being of every individual on the autism spectrum across the lifespan. The Plan will set the standard for public-private coordination and community engagement.” In addition, the Plan will be a living document, revised annually as new insights emerge or new challenges arise. The IACC looks forward to continued input from many stakeholders so that the Plan will be informed by both the most important needs and the most significant scientific opportunities.