IACC First Strategic Planning Workgroup - February 21, 2008

Agenda
Transcript
Summary

Time	Event
9:00 a.m.	Orientation and Expectations for the Day
9:20 a.m.	Summary of Workshop Activities
9:45 a.m.	General Discussion of Initiatives
10:30 a.m.	Break
10:45 a.m.	Grouping of Initiatives – Discussion of Overlap
12:00 p.m.	Working Lunch
12:30 p.m.	Discussion of Possible Additional Initiatives
2:00 p.m.	Discussion of Resources and Coordination for Implementation
2:30 p.m.	Discussion of Next Steps
3:00 p.m.	Adjournment

Meeting Transcript (PDF - 392 KB)

Summary

The goals for the strategic planning workgroup meeting were to discuss the 41 research opportunities generated by the scientific workshops. Thomas Insel, M.D. who chaired the meeting, asked the group to identify ideas that they felt were missing from the research opportunities developed by the scientific workshops. Discussion also focused on how to facilitate research through high-risk, high-payoff projects; technical assistance to help write fundable research proposals; and the need to involve scientists from different disciplines in autism spectrum disorder (ASD) research.

The SP workgroup discussed and formulated guiding principles/values for the strategic plan. The values for the plan are listed below and were later approved by the Interagency Autism Coordinating Committee (IACC) at its March 2008 meeting.

Values: Shared Principles

Sense of Urgency - We will focus on what steps we can take now to be responsive to the needs of individuals and families affected by ASD.
Spirit of Collaboration - We will treat others with respect, listen to diverse views with open minds, and foster discussions where participants can comfortably offer opposing opinions.
Consumer-focus - We will focus on making a difference in the lives of people affected by ASD, including individuals with ASD, their families, medical practitioners, educators, and scientists.
Excellence - We will pursue basic and clinical research of the highest quality to protect the safety and advance the best interests of those affected by ASD.
Partnerships in Action - We will value cross-disciplinary approaches, data sharing, teamwork, and partnerships with clearly defined roles and responsibilities.
Accountability - We will develop SMART (specific, measurable, achievable, realistic, and time-bound) research objectives aligned with funding priorities and develop systems for evaluation and course corrections.

Framework for Organizing the Research Opportunities

The workgroup members proposed a consumer-focused approach that would adopt the perspective of families experiencing ASD. Families ask questions such as, "Why did this happen?" "What services are available to me and how do I go about getting them?" The workgroup members then categorized the 41 research opportunities according to the six questions.

Framework for Research Opportunities:

When should I be concerned?
- What are the early warnings signs that something might be going on?
- Are there typical characteristics that are part of an ASD diagnosis?
- How much variation is there in symptoms and severity associated with ASD?
How can I understand what is happening?
- What could be happening early in development?
- Are there known biological differences that help explain ASD symptoms?
- Are there subgroups of people with ASD that have been identified?
What caused this to happen and can this be prevented?
- Is there something in my genetic or family history that poses a risk for ASD?
- How might genetics and/or the environment influence the occurrence of ASD?
- Can an exposure to something in the environment lead to the development of ASD?
Which treatments and interventions will help?
- When should treatments or interventions be started?
- What do we know makes a difference for those with ASD?
- What are the medical issues I need to know about?
- How do I know that treatments are both safe and effective?
Where can I turn for services?
- What types of services should I seek and where should I seek them?
- What is my state or local government doing to provide services for ASD?
- What is the cost of treatment and how will it be paid?
What does the future hold?
- What will my child be like when he/she gets older?
- What is known about adults with ASD and how can that help me plan for the future?
- How does society support individuals with ASD?

Strategic Planning Workgroup members:

Members
Thomas Insel, M.D. (Chair) Director National Institute of Mental Health
David Amaral, Ph.D. Professor, MIND Institute University of California, Davis	Alice Kau, Ph.D. Mental Retardation and Developmental Disability Branch National Institute of Child Health and Human Development
Peter Bell Executive Vice President, Programs and Services Autism Speaks	Catherine Lord, Ph.D. Director, University of Michigan Autism and Communication Disorders Center University of Michigan
Geraldine Dawson, Ph.D. Chief Scientific Officer Autism Speaks	Craig Newschaffer, Ph.D. Chair, Department of Epidemiology and Biostatics Drexel University School of Public Health
Gerald Fischbach, M.D. Scientific Director Simons Foundation Autism Research Initiative	Edwin Trevathan, M.D., M.P.H. Director, National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention
Daniel Geschwind, M.D., Ph.D. Professor of Neurology University of California, Los Angeles School of Medicine

IACC Observers:

Ellen Blackwell, M.S.W. Health Insurance Specialist Centers for Medicare & Medicaid Services	Cindy Lawler, Ph.D. Division of Extramural Research and Training National Institute of Environmental Health Sciences
Margaret Giannini, M.D., F.A.A.P. Director Office on Disability	Christine McKee, J.D
Lee Grossman President and CEO Autism Society of America	Lyn Redwood, R.N., M.S.N. Vice President Coalition for Safe Minds
Gail Houle, Ph.D. Associate Division Director Research-to-Practice Division Early Childhood Programs Office of Special Education Programs U.S. Department of Education	Alison Tepper Singer, M.B.A. Executive Vice President Autism Speaks

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