The International SMA Patient Registry
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International Spinal Muscular Atrophy Patient Registry
...uniting families with doctors and researchers to give tomorrow a fighting chance...
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.

Note: There are a number of upcoming Phase 1 clinical trials and biomarker studies scheduled to begin within the next twelve months. To learn more about biomarkers, click here. For more information about the structure of clinical trials in the United States, click here. Both articles are also available, along with previous editions of our Bridges newsletter, through the Participant Portal and the Researcher Portal under the "Newsletters" link.

 

This project is supported by Families of SMA.

Families of SMA