Kennedy Krieger Institute's first national online autism registry

October 2017

Research

Country of origin: USA

Kennedy Krieger Institute has the Interactive Autism Network (IAN) ? the first national online autism registry. Parents are filled with questions about autism, and, unfortunately, researchers are still struggling with many of the same questions. IAN brings these two groups together in a way that?s never been done before, through an online registry, to find answers.

Designed to drive autism research forward more quickly and efficiently, IAN facilitates the exploration of causes, treatments and the search for a possible cure to this puzzling disorder. The Kennedy Krieger project is spearheaded by the husband and wife research team of Drs. Paul and Kiely Law, physicians by training and parents of a 13-year-old son with autism. The IAN project will link researchers to parents, the people who know the most about their child, in two important ways:

Data Collection - Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN?s goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.

Research Recruitment - IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.

?Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure,? said Dr. Paul Law, Director, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. ?IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it.?

In addition to collecting data and recruiting participants for research, the IAN project hopes to engage the entire autism community ? from parents to policy makers to the media ? in an online meeting place where they can become more knowledgeable consumers of autism research. This arm of the IAN project provides consumer-friendly, evidence-based information about autism, explains the value of research in general, and gives updates on current and future research studies.

?By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukaemia community,? said Dr. Gary Goldstein, President and CEO of the Kennedy Krieger Institute. ?Thirty years ago, the majority of children with leukaemia died. Today, the majority survive because increased participation by a very organized research community led to discoveries of new and better treatments.?

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