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Autism Speaks Announces Collaboration with the National Children's Study

Partnership to advance study of genetic and environmental contribution to the risk of autism
April 14, 2009

Autism Speaks announces it will be advancing study of genetic and environmental contributions to the risk of autism by collaborating with the National Children's Study. The National Children's Study (NCS) was authorized to begin planning in 2000 through the Children's Health Act and will be one of the richest

research resources to ever study children's health. It aims to recruit 100,000 pregnant women from across the US at over 100 study sites and to follow those children through adulthood. A large number of genetic and environmental factors will be studied during pregnancy and through childhood, allowing researchers to understand the role of these environmental factors on health and disease. For the NCS, the environment is defined broadly, including nutritional, chemical, physical and psychosocial exposures. Researchers will analyze how these elements interact with each other, and what helpful and/or harmful effects they might have on children's health. As the research progresses, the findings will be made available as soon as possible. The preliminary results, available as soon as 2011, will form the basis of child health guidance, interventions, and policy for generations to come.

The NCS is led by a consortium of federal partners including: the U.S. Department of Health and Human Services, the NIH (primarily the NICHD and the NIEHS), the CDC, and the U.S. Environmental Protection Agency. (More information about the study can be found at Autism Speaks became involved in 2008 when it convened an expert panel to make recommendations on the research protocol as it relates to autism. With a sample of 100,000 children, it is anticipated that at least 600 children will develop an autism spectrum disorder. Because autism is a high priority topic for the NCS, this was a perfect opportunity for Autism Speaks to assist in planning the study data collection. "This is a truly unique opportunity to prospectively follow a large cohort of children in order to understand the environmental and genetic risk factors that are related to autism. This collaboration between Autism Speaks and the NCS is sure to provide new answers to understanding the causes of autism," remarked Geraldine Dawson, Ph.D., Chief Science Officer at Autism Speaks.

The discussion forum held in November by Autism Speaks and the NCS was multi-disciplinary by design, consisting of distinguished scientists who represented different areas of autism research, including epidemiology, medicine, developmental and clinical psychology, toxicology and environmental science, from both academic institutions as well as federal agencies. As a result of the initial meeting, two working groups were formed that have already begun to make positive recommendations on the study plan. The first group, which focuses on screening and diagnosis of autism in the NCS is led by Dr. Craig Newschaffer from Drexel University and Dr. Marshalyn Yeargin-Allsopp from the Developmental Disabilities Branch of the Centers for Disease Control and Prevention. The second working group, which is led by Dr. Irva Hertz-Picciotto from the University of California- Davis, is tasked with providing guidance on measures needed to capture data on environmental exposures and etiological factors. This includes measurement of environmental exposures, biospecimens and medical data.

The Vanguard pilot phase of the NCS has just kicked off in seven locations and will begin with pregnancy and follow children until they reach 12 months of age, so the timing is right for the autism panels to begin providing input into the next phase of the protocol. Gitanjali Taneja, Program Officer of the NCS, remarked: "We are thrilled to be working with Autism Speaks and gaining insight from those who have a direct link to the families and communities concerned about autism. The expert panels have already had several thoughtful discussions and raised important questions." Based on the recommendations from these expert committees, the protocol may be revised and expanded. While all of the recommendations may not be able to be incorporated into the core protocol, these suggestions and recommendations may form the basis for additional or "adjunct" studies that can be added on. This may include more in depth behavioral testing, exposure assessment analysis, or both. By enhancing the project and conducting these adjunct studies, Autism Speaks hopes this powerful longitudinal study will provide important new insights into autism, ones that will be leading us to new methods for early detection and prevention of autism spectrum disorder.