Susan Daniels

  • Acting director of office of autism research coordination at NIH (National Institutes of Health)
  • Involved in strategic planning & research at IACC (Interagency Autism Coordinating Committee)


Dr. Daniels spoke at IMFAR about the IACC and the NIH, on the autism research landscape, and IACC research and data sharing. Any errors or omission are on yours truly. -SR

IACC (Interagency Autism Coordinating Committee)

IACC background: formed under Combating Autism Act of 2006 (CAA) with the goal of accelerating the pace of autism research, and coordinating it as well. The CAA expired Sept 2011, but has been reauthorized.

The IACC consists of Federal and Public members (click photo to enlarge):

List of IACC members, new members are red

The IACC Mission (from the official site,

  • Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

  • Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

  • Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.

IACC Responsibilities include:

IACC Strategic Plan

  • The IACC does not fund research
  • Resarch Questions in the IACC plan include:
    • Diagnosis, biology, treatments, services, lifespan issues*, infrastructure, Data Sharing and surveillance, etc.

Next meeting will be July 2012 – Stay Tuned for details!

  • Will be announced on IACC website, listserve, and Twitter
  • The IACC welcomes public comments!

More info about the IACC: all public at

*Lifespan issues used to be a subset of services, but has been broken out because they are separate, important issues.


NIH (National Institutes of Health) Autism Efforts

Upcoming in 2012: Analysis of 2010 autism spectrum disorders research portfolio across both federal agencies and private organizations.

2010 Total funding across federal & private funding: 480M (Private = $74 M, Fed = $334 M). This is not all more spending, it’s better tracking, detailed data from HHS and Dept of Education. Private funding remained similar to 2009 level.

NIH has steadily increased  autism research funding since 1996, though now is plateauing with tight budget times. Compared to diseases, autism research has been on the upswing.

NIH Autism Centers of Excellence

  • Encompass centers and networks,
  • Foster collaboration between teams of specialists at same facility
  • Networks consist of researchers at many facilities

NDAR: National Database for autism research (

  • Contains data from over 25K subject, 200K data elements.
  • Data: Imaging, phenotype, genomic, gender, etc. related to human subjects.
  • Primary message: We need to build a culture of data sharing to advance autism research!
  • If everyone is sharing, then everyone can benefit.
    • Especially important in this time of tight budgets. 
    • Accelerates progress.

NIH Director Tom Insel says: Be smart, share your data — it will help protect your own research.