"The funding of this program is an important first step in Autism Speaks' efforts to advance innovative autism research," said Mark Roithmayr, president of Autism Speaks. "The database project has the potential to create a powerful tool for thousands of families, educators and researchers across the country and around the world."
The national online autism database will serve as a shared resource to centralize registration of families and individuals with autism spectrum disorders and connect them with researchers, parents and other individuals with autism throughout the country and the world. In addition to supporting scientific investigation, it will provide individuals and families affected by autism with unprecedented information about the experiences of others and serve as an open resource for educators and policy makers. A longitudinal database will enable families and individuals to participate in an online study aimed at understanding the patterns of treatment use and responses to those treatments. Online community features including internal message boards, researcher chat sessions, member profiles, a calendar, and links to outside autism resources are also planned. The fostering of communication between families and the research community will not only lead to research of the highest quality, but also invite parents to have direct input regarding the scientific and policy questions to be investigated.
Dr. Paul Law of the Kennedy Krieger Institute will oversee the development of the resource. According to Law, parental and scientific advisory boards will have continual influence on the project so that both parent and research interests are constantly considered. The data collection and management processes will be designed with careful attention to confidentiality and medical ethics, added Law.
"Our expectation is that, by creating a unique network of research scientists and families, the database will become an unprecedented source of information that will dramatically increase our knowledge and understanding of autism spectrum disorders," said Dr. Law.
Today, one in 166 individuals is diagnosed with an autism spectrum disorder. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others.
ABOUT AUTISM SPEAKS
Autism Speaks is committed to aggressively funding global biomedical research into the causes, prevention, treatments and cure for autism. It is devoted to raising public awareness about autism and its effects on individuals, families and society, and to bringing hope to all who deal with the hardships of the disorder. Autism Speaks was co-founded by Suzanne and Bob Wright in February, 2005 in response to the diagnosis of their grandson. Bob Wright is Chairman and CEO of NBC Universal and is Vice Chair of General Electric. To learn more about Autism Speaks, please visit its web site at www.autismspeaks.org.
ABOUT KENNEDY KRIEGER INSTITUTE
Internationally recognized for improving the lives of children with developmental disorders, Kennedy Krieger Institute in Baltimore, MD serves more than 12,000 children each year through inpatient and day treatment programs, 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 autism develops, while pioneering earlier autism diagnosis and interventions. Every year, more than 400 people come to Kennedy Krieger to train with experts in a wide variety of pediatric disciplines, including developmental medicine, psychology, physical therapy and special education. For more information, visit www.kennedykrieger.org.
Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
Published on PsychCentral.com. All rights reserved.