The Autism Research Landscape: The IACC, Research Funding and Data Sharing

12 Jun

Susan Daniels, Ph.D., is Acting Director, Office of Autism Research Coordination at the U.S. National Institute of Mental Health, NIH. She spoke at IMFAR 2012 on The Autism Research Landscape: The IACC, Research Funding and Data Sharing (click for the power point slides).

Below are a few points that caught my eye. (the entire presentation caught my eye, but here are a few I will highlight!)

As this will be the first meeting under the reauthorized Combating Autism Act (or CARA), the membership has changed. The federal members are

Thomas Insel (NIMH, NIH)
James Battey (NIDCD, NIH)
Linda Birnbaum (NIEHS, NIH)
Coleen Boyle (CDC)
Francis Collins (NIH)
Denise Dougherty (AHRQ)
Tiffany Farchione (FDA)
Alan Guttmacher (NICHD, NIH)
Laura Kavanagh (HRSA)
Donna Kimbark (DoD)
Walter Koroshetz (NINDS, NIH)
John O’Brien (CMS)
Alexa Posny (Dept of Ed)
Sharon Lewis (Administration for Community Living)

Members in bold are new.

Public members are:

Idil Abdull (Parent, Somali American Autism Foundation)
James Ball (JB Autism Consulting)
Anshu Batra (Parent & Developmental Pediatrician)
Noah Britton (Self advocate)
Sally Burton-Hoyle (Family member, Eastern Michigan University)
Matthew Carey (Parent)
Dennis Choi (Simons Foundation)
Jose Cordero (University of Puerto Rico)
Jan Crandy (Parent, Nevada State Autism Assistance Program)

Geraldine Dawson (Autism Speaks)
David Mandell (University of Pennsylvania)
Lyn Redwood (Parent, Coalition for SafeMinds)
Scott Michael Robertson (Self advocate, Autistic Self Advocacy Network)
John Elder Robison (Self advocate & Author)

Alison Tepper Singer (Parent, Autism Science Foundation)

Note that I am in the list above. Further note that I do not represent the IACC here or elsewhere.

The responsibilities of the IACC are:
1) Advise HHS’ Secretary Sebelius

2)Establish autism research priorities
IACC Strategic Plan for ASD Research

3) Monitor Federal activities and analyze research trends
IACC ASD Research Portfolio Analysis

4) Communicate advances in the field
IACC Summary of Advances in ASD Research

Autism research is over $400 million per year in the U.S.. Of that 82% is funded by the federal government. Autism research funding has nearly tripled over the past decade, but appears to be reaching a plateau for the next few years.

There is an effort to promote data sharing among research teams. For autism there is the National Database for Autism Research (NDAR) Tom Insel, director of the U.S. National Institute of Mental Health (NIMH) and chair of the IACC has also recently written an article: Time Matters – Why We Care So Much About Data Sharing

4 Responses to “The Autism Research Landscape: The IACC, Research Funding and Data Sharing”

  1. Marie June 13, 2012 at 02:43 #

    I am a teacher for Autistic students. The research funding sounds like a lot of money, but it is not enough to get the job done. The incidence of Autism has increased at an outstanding rate. Some people feel that we are just getting better at identifying Autism. I am not so sure. The National Database for Autism Research is an outstanding resource. I found another website that was helpful is . I am looking forward to replies from readers. I would like to know what others think about the current funding. Thank you for the information.

  2. VMGillen June 14, 2012 at 18:14 #

    Did the DoD always have a seat at the table? -just wondering: the Command response was pretty much a universal “send them away” about six years ago…


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