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.
Learn more about the registry and how to participate 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 coordinator Kaitlyn Esposito by phone (718-966-2593) or email (firstname.lastname@example.org).
We completed the first step of the CDE process in 2016 with the submission and subsequent acceptance of the Chiari I malformation Common Data Elements. You can find all of the NIH-supported CDEs (about Chiari and many other diseases and disorders) in the National Library of Medicine.
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 09/2020