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Elizabeth Cooney is a health reporter for the Worcester Telegram & Gazette.
Boston Globe Health and Science staff:
Karen Weintraub, Deputy Health and Science Editor, and Gideon Gil, Health and Science Editor.
Short White Coat blogger Ishani Ganguli
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Monday, April 2, 2007
Online autism registry seeks to connect families and researchers
Sixty families in Massachusetts were among 750 who tested a pilot version of the Interactive Autism Network, a website designed to accelerate research by connecting families with scientists who study the disorder. The site goes live today.
Julie Riley of Whitman, whose 7-year-old son is autistic, was among the testers during the pilot phase. She urged other parents to join the new network, both to learn from one another's experiences and to find answers for a future in which trial and error aren't the only way to discover what works.
"The more parents we get to participate, the more results we can get," she said in an interview. "I think it's a way to get closer to a cure."
The goal is to have families enter information about their children into a secure database that could be explored by researchers. The site is also designed to help researchers recruit participants for studies that have been approved by their institutional review boards.
There will be a forum for parents as well as information reviewed by doctors for scientific validity, founders Dr. Paul Law and Dr. Kiely Law of the Kennedy Krieger Institute in Baltimore said in an interview. They have a 13-year-old son with autism.
Dr. Margaret Bauman, associate professor of neurology at Harvard and head of the LADDERS program for developmental disorders at Massachusetts General Hospital, was on a committee that worked on the site.
"The hope is this mechanism will match families with researchers and vice versa," she said. "Parents who have been in the world of autism for a couple of years are asking questions."
The IAN project is supported by a $6.5 million grant from the non-profit Autism Speaks.