By Wendling, Patrice
Clinical Psychiatry News , Vol. 35, No. 4
The country's first online autism registry, set to debut this month, should accelerate research into the disease, the director of the project said.
Dr. Paul Law said the Interactive Autism Network, or IAN, will be launched by the Kennedy Krieger Institute, Baltimore. One of its goals will be to help find families of children with autism spectrum disorders.
In addition to making it possible for families to participate in online research projects, IAN will help get those families connected to other local and national projects for which they might qualify. By year's end, project organizers hope to have the largest collection of family-provided data ever compiled on autism spectrum disorders.
Of the 250 families that participated as pilot registrants, 80% had never participated in any autism research, even though many of them live in the Baltimore area with access to several major medical institutions.
Still others live in remote areas like upper North Dakota, where IAN may be the only research project available, said Dr. Law, whose son was diagnosed with an autism spectrum disorder in the 1990s.
For researchers, IAN provides access to an invaluable database and a potential pool of study participants. For example, if a researcher is interested in studying 8-to 10-year-old children with autism and a history of regression in a particular region, he or she will be able to contact the network to determine how many children meet the specific criteria. E-mails will then be sent to the families, notifying them of the study. Names will not be divulged, leaving families in control of their privacy.
Typically, researchers rely on broadly targeted recruitment vehicles such as newspaper advertisements, e-mail lists, and local autism support groups.
Few are successful because "they put the burden on families, whereas IAN finds them in a very deliberate and qualified way," said Dr. Law, director of informatics at the institute. …