Online project tracks autism

Scientists are hoping that the first interactive registry for autistic patients younger than 18 will lead to a better understanding of the condition.

In a pilot study to determine whether such a novel registry would work, Drs. Paul and Kiely Law at the Kennedy Krieger Institute in Baltimore recruited 800 families and had them fill out family profiles, including medical and developmental information on their autistic child or children. It takes about 90 minutes to complete the forms, which include consents to use the information for research purposes.

Of those who participated in the pilot study, 80% said they had never signed on to any research endeavor. The hope is that the information gathered on the site can be used to make sense of autism and to find any common but unrecognized factors in families.

The network, at www.IANproject.org, provides tools that will enable parents to see other family histories. Families will also have an opportunity to be matched to experimental studies near their homes.