NASET News Alert

First National Online Autism Registry Launched

April 04, 2007

Kennedy Krieger Institute Launches
First National Online Autism Registry
 
Kennedy Krieger Institute today announced the launch of the Interactive Autism Network (IAN) – the first national online autism registry – at www.IANproject.org. Parents are filled with questions about autism, and, unfortunately, researchers are still struggling with many of the same questions. IAN brings these two groups together in a way that’s never been done before, through an online registry, to find answers.

The network will collect valuable genealogical, environmental and treatment data from parents and will inform parents about local and national research studies. Many autism studies cannot be completed because researchers aren't able to enroll enough qualified participants.

"Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure," Dr. Paul Law, director of IAN, said in a prepared statement. "IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it."

Designed to drive autism research forward more quickly and efficiently, IAN will facilitate the exploration of causes, treatments and the search for a possible cure to this puzzling disorder. The Kennedy Krieger project is spearheaded by the husband and wife research team of Drs. Paul and Kiely Law, physicians by training and parents of a 13-year-old son with autism. The IAN project will link researchers to parents, the people who know the most about their child, in two important ways: 

  • Data Collection - Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN’s goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.
  • Research Recruitment - IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.

For more information visit:  http://www.kennedykrieger.org/kki_news.jsp?pid=6281
 
To read about the IAN Project, visit:  http://www.ianproject.org/

Back to NASET News Alert
lost password?