Initial Data from First U.S. Autism Registry Reveals Important Insights for Research Community
(Baltimore, MD) Initial data from the Kennedy Krieger Institute's Interactive Autism Network (IAN), the first U.S. autism registry, will be presented at the 7th Annual International Meeting for Autism Research 2008 (IMFAR) in London, UK on May 15-17.
As the only scientific meeting solely dedicated to autism spectrum disorders (ASD), IMFAR, says Dr. Paul Law, Director of the IAN Project at Kennedy Krieger Institute, is a natural forum to share some of the most pertinent ASD findings and trends reflected in IAN data. Having registered nearly 24,000 individuals in its inaugural year, the IAN Project is now recognized as the largest collection of autism data in the world. To date, the registry is helping to facilitate approximately 75 research projects across the United States.
"The IAN Project is not only able to provide researchers with a robust collection of data on children with ASD, but also facilitates opportunities for parents of children with ASD and researchers to connect," said Dr. Law. "It has ultimately created an invaluable opportunity to change the face of autism research as we know it."
Highlights from five abstracts submitted by Kennedy Krieger researchers include the following:
- Parental Medical History: Mothers of children with ASD are significantly more likely to report a history of depression (46 percent) and anxiety (26 percent), when compared to fathers (22 percent and 13 percent, respectively). Approximately 25 percent of fathers and 17 percent of mothers reported a history of speech or learning issues. Further research on parents of children with ASD may provide additional insight into biological and sociological factors related to autism.
- Autism Treatments: Families of children with ASD are using a number of autism interventions ranging from therapy to medication to diet, with the average number of simultaneous treatments being five, although half receive four or fewer. Many families are using interventions that do not have strong research to support their efficacy in children with ASD, emphasizing the need to further evaluate treatments that are in wide use by families to help guide research priority setting.
- Locale and Access: Living in a more rural state may delay the diagnosis of autism and limit access to private schools. However, this higher enrollment in public schools for children in rural states is more likely to afford opportunities for community inclusion with typically developing peers. Further research into these differences may improve service delivery and enhance child outcomes.
- Characteristics of Autism: Children with ASD, as well as their male and female siblings, were more likely to have a Moderately High or Very High birth weight when compared with children in the general U.S. population. In another study, children with ASD ages 6-11 and 12-17 had a significantly higher BMI compared with unaffected siblings, which may result in medical problems and/or taking medications that are known to affect weight and/or height. Understanding these anthropomorphic differences may provide clues to the underlying biology of ASD.
In addition, researchers will present two abstracts that demonstrated the value of IAN for researchers:
- Subject Matching: The IAN Project established an efficient web-based matching system to facilitate subject recruitment for ASD research by conducting a literature review to identify inclusion/exclusion criteria and demographic characteristics that autism researchers use most. The most common characteristics/criteria sought by researchers were: specific ASD diagnosis, age, gender, medical history, IQ, scores on autism instruments and medication history. At the time the abstract was submitted, 50 subject recruitment applications had been received by IAN.
- Twin Studies: 299 twin sets, 598 twins total, have enrolled in the IAN research protocol the largest collection of twins in published autism research. This is a major accomplishment, as researchers have historically found it difficult to recruit twin sets. Twin studies provide an opportunity for researchers to disentangle genetic and environmental factors.
About the Interactive Autism Network Project
Launched in April 2007, the Interactive Autism Network (IAN) ( 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, nearly 24,000 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.
More than 75 research projects at respected institutions across the country have applied to utilize IAN data to date, including: National Institute of Mental Health, Harvard Medical School, Yale Medical School and Mt. Sinai School of Medicine.
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.
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 Universal for more than twenty years. To learn more about Autism Speaks, please visit www.autismspeaks.org.
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