SMA Patient Registry Aids Research

by Margaret Wahl on April 1, 2009 - 7:08am

QUEST Vol. 16, No. 2

The International Spinal Muscular Atrophy Patient Registry, founded in 1986 at Indiana University, brings together individuals and families affected by SMA, and researchers studying SMA.

The Registry contains information from more than 1,600 families and 1,700 individuals with SMA around the world. In addition to recruiting participants for clinical trials and providing data for SMA research studies, the Registry helps centralize information.

To find out about all of the open studies listed on the SMA Registry, visit After joining the Registry you may request to have your contact information forwarded to researchers.

Registry participants must complete questionnaires about symptoms, treatment, medications, and other experiences with SMA. Participant information is stored in a secure database.

The SMA Registry is supported by the Patient Advisory Group of the International Coordinating Committee for SMA Clinical Trials, which includes representatives from Families of SMA, Fight SMA, Muscular Dystrophy Association, SMA Foundation, and other SMA advocacy groups. In 2008, the Registry joined the global collaborative Translational Research in Europe for the Assessment and Treatment of Neuromuscular Diseases (TREAT-NMD).

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