FAQs – SMA Registry and Clinical Trial Finder

The purpose of the SMA Registry and Clinical Trial Finder is to bring all the registries, trials, and studies related to SMA together into one place where the community can easily search for opportunities that are right for them. Community members can also use the tool to locate published results of completed studies. 

These registries, trials, and studies are all the entries related to SMA that exist on clinicaltrials.gov, a website and online database of clinical research studies and information about their results.  You can explore them—without applying filters—to get a feel for the SMA research opportunities that are currently available. Or, you can add your location and the filters that apply to you or a loved one with SMA to find trials that are applicable to you. 

We recommend first using the purple bar to input any keyword, location, and distance to the location. Then, click the orange “Filter Results” button and apply any filters that are relevant to you. Finally, click the white “Find a Trial” button in the purple bar to reveal registries, trials, and studies that match your needs. 

You may refresh the page and redo your search by clicking the purple “Find a Trial” button in the top right corner. 

Located at the top right corner of the “Study Details” page for any entry, there is a link to the complete entry on clinicaltrials.gov. The entry on clinicaltrials.gov will have additional information, including a detailed summary, publications related to the study, and a full list of research collaborators, among other details. 

Once you have found a trial and trial site (the actual location of the clinical trial) that works for you, you can click on the purple marker on the Trial Locations map to see the site phone number and email, if available. For more information, you can click the “ClinicalTrials.gov Identifier” link to the trial on clinicaltrials.gov, located at the top right corner of the page. 

You can always increase the distance from your location to look for trials that are a little farther from you. If you filtered by a specific SMA type, try changing the filter to “All Spinal Muscular Atrophies,” as there are some trials that do not specify the type of SMA required to be eligible. 

You can always reach out to the study team to see if they can accommodate a participant who lives far away from their study site. The clinical research coordinator (CRC) may be able to help make travel arrangements. If traveling long distances by car or by air is new for you, check out our Travel Planners to help organize travel details. 

If you are encountering any technical issues with the SMA Registry and Clinical Trial Finder, please email [email protected] so we can address the issue.