A Case Study in Registries: Interactive Autism Network

Goal: • Solve the issue of subject recruitment • Provide a large database of self-reported data for the research community • Educate the community, including parents and care providers, about research and engage them in the research process • Facilitate networking amongst all those involved in autism research

mdlogix’s software system is being used for the Interactive Autism Network (IAN), a national Web-based autism registry and research management project established by the Kennedy Krieger Institute and funded by Autism Speaks. Since the IAN Project publicly launched in April 2007, it has become the world’s largest such registry with more than 20,000 enrolled by early 2008. The mdlogix system was created to easily register patients online and gather data for research or public health activities, regardless of the disease or disorder.

Challenge:

The U.S. Centers for Disease Control and Prevention released data in 2007 that found about 1 in 150 8-year-old children in multiple areas of the United States had an autism spectrum disorder (ASD). The cause or causes are still unknown. Research and collaboration among parents, researchers and care providers is woefully inadequate.

Solution:

Kennedy Krieger Institute hired mdlogix to use its Subject & Protocol Registry and Case Report Forms (CRF)-Electronic Data Capture (EDC) software modules for the IAN Project. The mdlogix system helps gather research data, collected from parents, on children diagnosed with an ASD to better understand the disease, and help parents and researchers come together on a shared platform, the Internet. How mdlogix does it: Through IAN (www.IANproject.org), parents can participate in research over the Internet that is secure and private. The mdlogix Subject & Protocol Registry module is designed to facilitate collection of scientifically rigorous data from research subjects in the least burdensome way possible. It was built to accommodate the hectic lives of parents within the constraints of medical research. Parents can self register and consent, then are asked to complete questionnaires particular to themselves and their children. The data gathered helps ASD researchers in their search for potential causes, treatments, and a possible cure. With the mdlogix CRF-EDC module, researchers can build CRFs quickly and deploy them for use.

The Client Said:

“The mdlogix system is helping us transform the face of autism research as we know it. The fact that IAN has already become a vital resource for parents and researchers, so early in its lifespan, bodes extremely well for the potential of this project, and ultimately, to the pursuit of answers in autism.”
Paul Law, MD, PhD
IAN Project Director
Kennedy Krieger Institute
Baltimore, Maryland