The National Institutes of Health (NIH)
The NIH, based in Bethesda, Maryland,
is comprised of 27 separate institutes and centers, each with
a different medical or health-related focus. Research into autism
is spread among several of the NIH’s branches—no less varied
than the spectrum of autism itself. Funding is often collaborative between
these related branches and sometimes includes other federal departments.
In addition, various branches of the NIH sponsor autism research directly
by funding independent research.
Currently, autism-related research
funding is under the following mandates; note that some are programs
or specific studies while others are entire research centers:
Unfortunately, autism has not been singled out and addressed by the NIH
until relatively recently. It was 1995 when the first-ever congressionally
mandated “State of the Science in Autism” conference convened.
The conference brought together a combination of distinguished
scientists and parent leaders from non-profit community organizations
and produced a report that charted the course for future research and
spurred the NIH into its collaborative autism research programs.
All research
centers/institutions and program members are listed in the Other
Research Centers section of this area of the OAR’s
website, with their respective funding affiliations (if any).
Guidance: NIH-Autism Coordinating Committee
The 1995 conference resulted in the formation of the NIH
Autism Coordinating Committee (NIH/ACC) in 1997. The NIH/ACC
is a collection of autism-related nonprofit and community groups,
distinguished scientists, representatives from various NIH
branches, specifically the National
Institutes of Children’s
and Health and Human Development (NICHD), Neurological
Disorders and Stroke (NINDS), Mental
Health (NIMH), Deafness
and Communication Disorders (NIDCD), and Environmental
Health Sciences (NIEHS) would as well as the CDC, Food and
Drug Administration and even the U.S. Department of
Education. Together, the NIH/ACC has begun to build
nationwide consensus about the issues and best practices concerning
the crucial first step in research, the diagnosis of autism
and the search for a biologic identifier. Their analysis is
currently in print (Journal of Autism and Developmental Disorders,
1996; 26(2): 121-54) and supported by many of the top professional
and medical associations in the country. The NIH/ACC
is now targeting autism treatment for their next consensus-building
endeavor.
The NIH/ACC holds semi-annual conferences
to give its guests and members an open forum for communication.
Topics for the conferences have ranged from early intervention
and treatment to the potential molecular and cellular
mechanisms in autism.
In November of 2001, DHHS secretary, Tommy
Thompson called for the creation of a new NIH-IACC (Inter-agency
Autism Coordinating Committee), which was established to facilitate
the exchange of information on autism research and
activities among the government agencies, as well as advocacy
and other groups that are focused on autism-related disorders.
This committee is a direct result of the Children’s Health Act of
2000. The NIH-ACC members attend meetings of the IACC for this
purpose. NIMH has been designated as the government agency to lead the
work of the IACC. For more information, click here.
Collaboration: Collaborative Programs of Excellence in Autism
Research Network
Also in 1997, the Collaborative
Programs of Excellence in Autism (CPEA) Network were begun. The
program is a five year, $42 million dollar network currently
consisting of nine (9) university-based research centers with
funding primarily from the NICHD and the National Institute
on Deafness and Other Communication Disorders (NIDCD). These
9 centers, each with a different research focus, are primarily
exploring clinical and basic research-related fields. Each of
the 9 primary centers in the CPEA network works closely with
secondary partner research centers thereby expanding the scale
and scope of NIH’s efforts. The
current 9 CPEA centers are listed below, along with the center’s
research focus, and their partner locations. Look for more information
and links in the Research
Center Directory.
Boston University, Boston, MA: Linguistic and social
abilities of those with autism; connections to brain functioning
University
of California-Davis: Emulation and motor functioning in individuals
with autism; development and regression issues
University of
California, Los Angeles (UCLA): Language and communication in
autism.
University of Rochester, NY: Genetic and teratologic
studies of autism in humans and animal models. In conjunction with York
University, University of Toronto (Canada), Cornell Medical Center,
and USEPA.
University of Pittsburgh, PA: Autism as a complex information-processing
disorder. In conjunction with Carnegie Mellon University and
Case Western Reserve University.
University of Texas Health Sciences Center at Houston:
Neurological aspects of autism: communication and social ability
as it affects brain functioning
Yale University, New Haven, CT: Genome studies
in autism. In conjunction with the University of Chicago, UCLA,
Oxford University, University of London, and the European Consortium--funded
by the Medical Research Council of Great Britain and the Wellcome
Fund.
University of Washington, Seattle: Genome studies, early
diagnosis, language and cognition, and neuroimaging. In conjunction
with the University of Alaska, University of Florida, University of
Montana, University of Oregon, and Vanderbilt University.
University
of Utah, Salt Lake City: Genetic studies of autism. In conjunction
with Utah State University.
Collaboration: NIEHS and the Environmental Protection Agency
In November of 2001, it was announced that the NIEHS would
partner with the Environmental Protection
Agency to
fund four new children’s environmental health research programs
that will focus on childhood autism. The NIEHS and EPA have already
co-funded 8 other research centers focused on other issues of
environmental health. The centers, with their research focus are listed
below (and can be found in the Research
Center Directory):
University of California, Davis M.I.N.D
(Medical Investigation of Neurodevelopmental Disorders) institute.
Large case-control epidemiological study of various environmental
risk factor exposures and the development of autism. The NIEHS
and EPA funded program is just one of many diverse projects underway
at the institute.
Robert Wood Johnson Medical School and the University
of Dentistry of New Jersey. Here the Center for Childhood Neurotoxicology
and Assessment studies the possible influence of mercury, lead
and valproic acid on autism, learning disabilities and regression.
Includes studies of brain development through the use of imaging
technology and studies of possible genetic susceptibilities to
toxins.
Children’s Hospital Medical Center of Cincinnati, Ohio.
Two studies; the first a study of controllable environmental
lead exposure in children, the second, a study of unborn and
newborn babies’ possible
exposure to pesticides, environmental tobacco smoke and lead.
University
of Illinois, Urbana-Champaign. The Friend’s Children’s
Environmental Health Center will work with Hmong and Laotian
communities --traditionally exposed to PCBs and environmental
mercury-- studying the impact of the contaminants on motor, sensory and
mental development. In addition, researchers will also study similar animal
models
Collaboration: Studies to Advance Autism Research and Treatment
Centers Program
In response to the Children’s Health Act of 2000, the NIH-ACC distributed
a “Request for Applications” for a new program called the
Studies to Advance Autism Research and Treatment
(STAART) Centers Program. The
program called for the establishment of several cohesive research centers
under the supervision of a collaborative steering committee. The
research centers are intended to bring together the best in expertise
and infrastructure in currently separate centers. The centers will
focus primarily on treatment but will also study causes, diagnosis, early
detection, and prevention by using approaches such as developmental neurobiology,
genetics, and psychopharmacology. There are currently eight (8) STAART Centers in existence, and they each are performing studies, including
the effects of nutrition on behavior and the use of various medications
to treat autism. Links can be found in the Research Center Directory.
The STAART Centers:
STAART Network Center: Boston University School of Medicine
Project Descriptions: Social and Affective Processes in Autism
Primary Site: Boston University School of Medicine
Helen Tager-Flusberg, Ph.D., Director
Susan Folstein, Co-director
STAART Network Center: Kennedy Krieger Institute
Project Descriptions: Neurobiologic Origins and Innovative Treatment
of Autism
Primary Site: Kennedy Krieger Institute, Baltimore,
MD
Rebecca Landa, Ph.D., Director
Mark Batshaw, M.D., Co-director
STAART Network Center: Mt. Sinai School of Medicine:
Project Description: Greater New York Autism Research Center of
Excellence
Primary Site: Mt. Sinai School of Medicine
Eric Hollander, M.D., Director
Joseph Buxbaum, Co-director
STAART Network Center: University of California at Los Angeles
Project
Descriptions: Social and Language Deficits in Autism—Biology
and Treatment
Primary Site: University of California, Los Angeles
(UCLA)
Marian Sigman, Ph.D., Director
Daniel Geschwind, M.D., Ph.D., Co-director
STAART Network Center: University of North Caroline, Chapel Hill
Project Descriptions: Gene-Brain Relationships in Autism
Primary
Site: University of North Carolina, Chapel Hill
Joseph Piven, M.D., Director
James Bodfish, Ph.D., Co-director
STAART Network Center: University of Rochester
Project Descriptions: The Autism Research Centers of Excellence:
The STAART Program
Primary Site: University of Rochester
Patricia Rodier, Ph.D., Director
Susan Hyman, M.D., Co-director
STAART Network Center: University of Washington
Project Descriptions: University of Washington Autism Research
Center of Excellence
Primary Site: University of Washington
Geraldine Dawson, Ph.D., Director
Elizabeth Aylward, Ph.D., Co-director
STAART Network Center: Yale University
Project Descriptions: The Social Neuroscience of Autism and Related
Disorders
Primary Site: Yale University
Fred Volkmar, M.D., Director
Ami Klin, Ph.D., Co-director
In 2003, the CPEA network created
the Data Coordinating Center, a tripartite aggregate based in
Medford, Massachusetts, with the goal of consolidating all data and statistical
information between the nine (9) CPEA’s, as well as the eight (8)
STAART Centers. The three organizations involved include DMSTAT, Inc.;
the Boston University Statistics and Consulting Unit; and the Boston University
School of Public Health’s
Department of Biostatistics. A five year, $65 million project,
the collective specifically seeks to more efficiently process and compare
results from the research centers involved.
Collaboration: NIH Autism Centers of Excellence (ACE)
In 2007, the NIH created the Autism Centers of Excellence (ACE) program, which is a consolidation of two prior NIH programs: the Collaborative Programs of Excellence in Autism (CPEA), which was created in 1997, and the Studies to Advance Autism Research and Treatment (STAART), which was created in 2002. The goal of the ACE program is to “to identify the causes of autism spectrum disorders (ASD) and develop new and improved treatments.” The ACE program is supported by five NIH Institutes:
The ACE program is comprised of six centers and five networks. The current centers and networks and their respective goals are listed below. Look for more information and links in the Research Center Directory.
The Centers:
University of California, Los Angeles. This Center will try to find clues to language-related communication problems by looking at genes, behavior and brain structure and functioning.
University of California, San Diego. This Center will use brain imaging to track brain development in children believed to be at risk for ASD. The Center will collect information on how the brains of very young children with autism process and respond to information.
University of Illinois at Chicago. This Center will focus on genetic factors and brain functions that could account for repetitive behaviors in people with ASD and test whether genetic differences influence how individuals respond to medications intended to reduce the occurrence of these behaviors.
University of Pittsburgh. This Center will use brain-imaging techniques to study how infants at risk for autism and toddlers diagnosed with the disorder place information into categories. Previous research shows that the ability to organize information into categories is critical to language development.
University of Washington. This Center will seek to identify genes and other potential factors that may predispose an individual toward ASD, as well as protective factors.
Yale University. This Center will study social interactions and development in children ages 12–24 months with ASD. The researchers will also use brain-imaging techniques to study the brain structure and functioning of a group of 10-year old children with ASD who have been followed since age 24 months in previous research studies.
The Networks:
Drexel University. This Network will study possible risk factors and biological indicators for ASD during the prenatal, neonatal and early postnatal periods. A number of environmental exposures, ranging from persistent organic pollutants to medications taken during pregnancy, may be investigated.
University of California, Davis. This Network will compare an intensive behavioral intervention to standard community-based treatment in 18-24-month-old children with autism to inform efforts to provide the best treatment outcomes for very young children with autism.
University of California, Los Angeles. This Network aims to recruit 400 families that have one child affected by ASD to expand the existing data on the relationship between autism-related genes and physical traits. The investigators also aim to identify rare genetic variants, mutations, and abnormalities that affect risk for ASD.
University of North Carolina at Chapel Hill. Researchers operating in this Network of sites will use brain imaging techniques to compile brain images of very young infants in order to identify potential brain differences in children who go on to develop ASD.
Wayne State University. This Network will study whether buspirone promotes more normal growth and development of the brains of children with autism. Buspirone, which helps stimulate serotonin production, was shown in a pilot study by the Wayne State researchers to improve social interaction, and reduce repetitive behavior, sensory dysfunction, and anxiety in children with autism.
Independent Research Grants
In addition to research being funded at CPEA locations, each
branch of the NIH is entitled to fund investigators through open
research competitions. Often funds are pooled between various branches
along the same collaboration lines stated above. These types of grants
can be very competitive and often require the investigators to
have already published preliminary results. To search through biomedical
research grants the NIH and other federal agencies are currently sponsoring
you can search the CRISP (Computer Retrieval
of Information on Scientific Projects) database.
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