The International Spinal Muscular Atrophy Patient Registry was created in 1986.  Its function is to unite families with SMA to researchers who are studying the disease. Data is maintained by Indiana University in the Department of Medical and Molecular Genetics, Hereditary Genomics Division. The Registry contains information from over 1,600 families and over 1,700 individuals with SMA from all over the world and continues to grow. The Registry collects information including:  

• Demographics
• Family History
• Motor Development
• Diagnosis
• Symptoms
• Testing (including genetic)
• Treatments
• Outcomes

Many other data points are collected by the Registry as well. A Registry staff member can assist you in determining which variables or information might be important to your research study. You can view the specific data elements that the Registry collects by visiting the Participant Portal link at the top of this page and go to the Join the Registry link. Here you will be directed to a page where the forms that participants fill out can be downloaded. These forms will give you a better idea of what sorts of data elements are available to researchers.

There is no cost to use the International SMA Patient Registry. Researchers can request use of the Registry when they need de-identified/statistical data or when they need assistance recruiting participants for studies and clinical trials. All research requests must go through an approval process to ensure that the proposed study is a sound use of the Registry and that participants will be protected.

Use the links on the right to find out more about using the International SMA Patient Registry to aid in your research efforts.