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The International Spinal Muscular Atrophy Patient Registry
Coordinated by the Department of Medical and Molecular Genetics Department at Indiana University and initiated by Families of SMA (FSMA) in 1986
The purpose of the International Spinal Muscular Atrophy Patient Registry is to provide a resource by which individuals and families affected by SMA and researchers interested in studying SMA can come into contact with one another. Investigators who are interested in SMA research need access to information concerning SMA patients and families. It is important to establish a system whereby scientists, clinicians and families with SMA can get in touch with each other. The SMA Patient Registry makes this happen. By registering information with the SMA Patient Registry you are in no way committing yourself to participate in any research project. Your information simply allows the Registry to notify you of any research projects which you or a family member may qualify to participate in, should you choose to do so. If you are interested in signing up to be contacted about clinical trials and clinical research, please visit:
The International SMA Patient Registry.
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