SMA registry – United States of America
The International Spinal Muscular Atrophy Patient Registry is located at Indiana University School of Medicine, Indianapolis, Indiana, USA.
This project is supported by the Patient Advisory Group of the International Coordinating Committee for SMA Clinical Trials which includes: Families of SMA (www.fsma.org), FightSMA (www.fightsma.org), Muscular Dystrophy Association (www.mdausa.org), SMA Foundation (www.smafoundation.org) and other SMA advocacy groups.
The Principal Investigator is Dr. Tatiana Foroud. You can contact the registry by email at firstname.lastname@example.org or by phone on +1-317-274-5745, or you can visit the registry’s website at https://smaregistry.iu.edu.