DMD and SMA global registry - TREAT-NMD: A European Network of Excellence for neuromuscular disorders

SMA patient registry in the USA

The International Spinal Muscular Atrophy Patient Registry is physically located at Indiana University School of Medicine, Indianapolis, Indiana, USA. The registry is overseen by an external Oversight Committee for the International Coordinating Committee (ICC) and is supported by the following patient advocacy groups: Muscular Dystrophy Association, USA, (www.mdausa.org), Families of Spinal Muscular Atrophy (www.fsma.org), Spinal Muscular Atrophy Foundation (www.smafoundation.org) and FightSMA (www.fightsma.org). The Principal Investigator is Dr. Tatiana Foroud. You can contact the registry by email at sma@iupui.edu or by phone on 1-866-482-0248 (toll free), or you can visit the registry's website at http://smaregistry.iu.edu.