Welcome to the International Spinal Muscular Atrophy Patient Registry (the Registry). The Registry is a bridge connecting Spinal Muscular Atrophy (SMA) patients and families with researchers who are investigating SMA. The Registry is housed at Indiana University School of Medicine in the Department of Medical and Molecular Genetics. Individuals and families with SMA join the Registry and provide information on various aspects of SMA such as symptoms, age of onset, and treatment. SMA researchers can then use the Registry as a data/information resource and for recruitment of participants for research studies and clinical trials. Making this connection between families and researchers is an important step in SMA research.

Information in this website is provided for both potential participants and potential researchers. If you have any questions about the Registry, please feel free to contact the Registry staff.

New! The first issue of Bridges, the International SMA Patient Registry Newsletter is now available through the Participant Portal and the Researcher Portal.

This project is supported by the Patient Advisory Group of the International Coordinating Committee for SMA Clinical Trials which includes Families of SMA, FightSMA, the Muscular Dystrophy Association, and the Spinal Muscular Atrophy Foundation, and other SMA advocacy groups.