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IACC First Strategic Planning Workgroup - February 21, 2008

meeting agenda Agenda
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

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meeting transcript Transcript

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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:

Thomas Insel, M.D. (Chair)
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.
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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