Autism Research Database Cuts Cost, Connects Patients

Cynthia Johnson, for HealthLeaders Media , November 3, 2010

Paul and Kiely did eventually fulfill their dream of helping residents of the Congo, where they started a health project with 7,000 patients. They also worked in Bangladesh, Egypt, India, and Ethiopia.

The Laws' work overseas continued until 2005, when Paul accepted a position at the Kennedy Krieger Institute in Baltimore to work on the IAN project, which received three years of startup funding from the advocacy organization Autism Speaks. This amounted to about $2 million per year. The project's three main funders are now the Simons Foundation, Autism Speaks, and the National Institutes of Health.

Building a community

In addition to its research study, the IAN project has another component called IAN Community.
Paul describes it as a place where families can go to learn more about autism research. Features of the site include online polls, discussion forums, news articles, and event information.

In the future, the IAN project hopes to apply some of the social networking features of another company with whom it exchanges ideas—PatientsLikeMe.

The Cambridge-based company has developed an online community of patients who share outcome-based data with people who are trying to treat diseases such as ALS (amyotrophic lateral sclerosis).

"We would like IAN to provide more and more value to the families who are participating," says Paul. "PatientsLikeMe functionality would be great."

Although the IAN project would like to improve upon its social networking elements, PatientsLikeMe would also like to learn more about the IAN project's research component. "There are a lot of hurdles that we've overcome that they have yet to overcome," says Paul. "They haven't achieved the research stuff, and we haven't achieved the social networking stuff."

Even though social networking features are still under development, Kiely points out that users of Ian Community are able to view the collective answers of other members.

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