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First national autism registry shows notable impact on autism research in opening year
Date:3/31/2008

(Baltimore, MD) On April 2, the Kennedy Krieger Institute will commemorate World Autism Awareness Day and National Autism Awareness Month with the one-year anniversary of the Interactive Autism Network (IAN), the first national autism registry.

Launched in April 2007 by the Kennedy Krieger Institute, the IAN Project (www.IANProject.org) facilitates the exploration of causes, treatments, and the search for a possible cure to autism. As an online network that links parents to researchers, the IAN Project is accelerating the pace of autism research in two important ways. First, parents the people who know the most about their child provide valuable data to researchers without having to leave their home or office. Second, children with autism are matched with local and national research studies for which they qualify.

To date, more than 22,000 individuals have joined the IAN Project, making it the largest collection of autism data in the world. Represented in the registry are families from all 50 states, as well as the District of Columbia, American Samoa, Northern Mariana Islands, Guam, Marshall Islands and Palau.

By facilitating opportunities for parents of children with autism and researchers to connect, the IAN Project has taken a lead role in fostering dialogue and mutual understanding amongst the many stakeholders in the autism community, said Dr. Paul Law, Director of the Interactive Autism Network at Kennedy Krieger Institute in Baltimore, Maryland. It has ultimately created an invaluable opportunity to change the face of research as we know it.

From data collected thus far, the IAN Project has revealed significant insights, including:

  • Maternal Depression: Of those enrolled in the IAN Project, 46 percent of mothers with children with autism reported a diagnosis of depression, versus the general population where approximately 20 percent of women are faced
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Contact: Corrie Allen
callen@spectrumscience.com
202-955-6222
Kennedy Krieger Institute
Source:Eurekalert  

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