CSF has partnered with Genetic Alliance and the Platform for Engaging Everyone Responsibly (PEER) to set up the first ever international registry for patients. This registry will use the previously developed Common Data Elements (CDEs) so that all information that you enter can be used in multiple studies not just at a single research institution, but all of the research labs across the globe.
For a more detailed explanation of the registry, click here.
If you have any questions about the registry, the registration process or the CDEs being used, please contact the Bobby Jones CSF Registry research assistant Kaitlyn Esposito by phone (718-966-2593) or email (firstname.lastname@example.org).
Upon scientific review by experts from the Bobby Jones CSF Scientific Education & Advisory Board, we were pleased to fund several grants which were submitted for review in response to our 2012-2013 Request for Proposals.
Reviewed on 9/2019