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- Is there a fee for using the International SMA Patient Registry?
- I am conducting an industry sponsored clinical trial. Can I use the International SMA Patient Registry to help with recruitment?
- Can you send me a list of Registry participants who meet my study criteria so that I can contact them directly?
- How long does it take to get research requests approved?
- What kind of data is available to researchers through the International SMA Patient Registry?
Is there a fee for using the International SMA Patient Registry?
No, the Registry is a free tool for the SMA research community.
I am conducting an industry sponsored clinical trial. Can I use the International SMA Patient Registry to help with recruitment?
Yes! The Registry can be used for many different kind of studies, including industry sponsored clinical trials.
Can you send me a list of Registry participants who meet my study criteria so that I can contact them directly?
No. We cannot send you any Registry participant’s identifying information without explicit permission to do so. If you are recruiting for a trial, we will contact Registry participants and then forward on to you the contact information for those participants who have granted us permission to do so. We are dedicated to protecting the rights and privacy of Registry participants.
How long does it take to get research requests approved?
Research request approval for the use of identifiable information can take up to 4 weeks to be approved by the International SMA Patient Registry Oversight Committee and the Indiana University IRB. We make every effort to hasten this process. Proposals that request de-identified data typically move much faster through the approval process as they do not require review by the International SMA Patient Registry Oversight Committee.
What kind of data is available to researchers through the International SMA Patient Registry?
The Registry collects information on many aspects of SMA, from onset of symptoms to methods of therapeutic intervention. If you would like to see specific data elements that the Registry collects, please visit 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.
