childrens health act 2000

What It Means to Autism Research

The Children’s Health Act of 2000 was responsible for the creation of the Interagency Autism Coordinating Committee (IACC), a committee that includes the directors of five NIH institutes—the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Child Health and Human Development (NICHD), and the National Institute of Environmental Health Sciences (NIEHS)—as well as representatives from the Health Resource Services Administration, the National Center on Birth Defects and Developmental Disabilities (a part of the Centers for Disease Control), the Agency for Toxic Substances and Disease Registry, the Substance Abuse and Mental Health Services Administration, the Administration on Developmental Disabilities, the Centers for Medicare and Medicaid Services, the U.S. Food and Drug Administration, and the U.S. Department of Education. The Committee, instructed by the Congress to develop a 10-year agenda for autism research, introduced the plan, dubbed a“matri” or a“roadmap” at the first Autism Summit Conference in November 2003. The roadmap indicates priorities for research for years 1 to 3, years 4 to 6, and years 7 to 10.

The five NIH institutes of the IACC have established the Studies to Advance Autism Research and Treatment (STAART) Network, composed of eight network centers. They will conduct research in the fields of developmental neurobiology, genetics, and psychopharmacology. Each center is pursuing its own particular mix of studies, but there also will be multi-site clinical trials within the STAART network.

The STAART centers are located at the following sites:

•               University of North Carolina, Chapel Hill

•               Yale University, Connecticut

•               University of Washington, Seattle

•               University of California, Los Angeles

•               Mount Sinai Medical School, New York

•               Kennedy Krieger Institute, Maryland

•               Boston University, Massachusetts

•               University of Rochester, New York

A data coordination center will analyze the data generated by both the STAART network and the Collaborative Programs of Excellence in Autism (CPEA). This latter program, funded by the NICHD and the NIDCD Network on the Neurobiology and Genetics of Autism, consists of 10 sites. The CPEA is at present studying the world’s largest group of well-diagnosed individuals with autism characterized by genetic and developmental profiles.

The CPEA centers are located at:

•               Boston University, Massachusetts

•               University of California, Davis

•               University of California, Irvine

•               University of California, Los Angeles

•               Yale University, Connecticut

•               University of Washington, Seattle

•               University of Rochester, New York

•               University of Texas, Houston

•               University of Pittsburgh, Pennsylvania

•               University of Utah, Salt Lake City

The NIEHS has programs at:

•               Center for Childhood Neurotoxicology and Assessment, University of Medicine & Dentistry, New Jersey

•               The Center for the Study of Environmental Factors in the Etiology of Autism, University of California, Davis