First National Autism Registry Shows Notable Impact On Autism Research in Opening Year
(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 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 with clinical depression in their lifetime.
- Autism Treatments: Most children with autism are on 5 or more different treatments at any given time, 67 percent of which are not covered by insurance. Parents have reported they spend an average of $500/month on treatments.
These insights emphasize the tremendous financial and emotional support that must be provided to families of children with autism, and opens the door for researchers to further investigate treatments that are viable for scientific study, as well as pursue new lines of study, as in the case of parental depression.
According to Dr. Law, the IAN Project is well positioned to facilitate many of these studies going forward. To date, more than 60 researchers from respected institutions across the country have applied to utilize IAN data, including: National Institute of Mental Health, Harvard Medical School, Yale Medical School and Mt. Sinai School of Medicine.
"We are just now beginning to scratch the surface of the complex issues associated with autism. Although we have made some strides, much more work remains to be done. By informing and educating even more families and researchers across the country about the IAN Project, we can continue to organize and mobilize the autism community's research efforts," said Dr. Gary Goldstein, President and CEO of Kennedy Krieger Institute.
The IAN Project is run by the Kennedy Krieger Institute and funded by Autism Speaks. Parents and researchers may participate in IAN and learn more about the initiative by visiting www.IANProject.org.
Members of the press may obtain an IAN Anniversary Update by clicking here. This two-page piece provides more detailed information on IAN, including first-year milestones, insights and research successes. Also included in the Update is an overview of future projects, as well as a short piece on the individuals and vision behind IAN's success.
Autism spectrum disorders (ASD) is the nation's fastest growing developmental disorder, with current incidence rates estimated at 1 in 150 children. This year more children will be diagnosed with autism than AIDS, diabetes and cancer combined, yet profound gaps remain in our understanding of both the causes and cures of the disorder. Continued research and education about developmental disruptions in individuals with ASD is crucial, as early detection and intervention can lead to improved outcomes in individuals with ASD.
About the Kennedy Krieger Institute
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 13,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.
About Autism Speaks
Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Vice Chairman, General Electric, and served as chief executive officer of NBC for more than twenty years. To learn more about Autism Speaks, please visit www.autismspeaks.org.
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