Two types of research can be conducted using data from the Registry.

1. Research with De-identified Data: Research requests that do not require information that would identify Registry participants are known as de-identified data requests. Such requests are typically made for statistical or demographic data compiled from Registry participants’ responses to Registry questionnaires. De-identified data requests can also be made when a researcher is conducting a study in which participation will be anonymous, for example through responses to an anonymous online survey.
   
   Examples of De-identified Data Requests:
   
   
   • Request for data on gastro-intestinal symptoms and feeding interventions in individuals with Type I SMA
     
   • Request to alert participants with Type III SMA who are over the age of 18 about an anonymous online survey
     
     
2. Research with Identifiable Information: Research requests that ask for information that can identify Registry participants requires full evaluation by a panel of experts to ensure that they are sound studies and that all appropriate measures are in place to protect potential subjects. Researchers often make a request for such information when they need to recruit individuals with SMA for clinical trials and other studies.  No identifiable information is released to the researcher without the participant’s explicit, written permission to do so.