CRID (clinical research ID) is a unique, universal, patient-generated identifier that can be used to facilitate collaborative rare disease clinical research. This research ID is available in multiple languages to support patients globally. All patient data are encrypted in-transit, at rest and within the application. The ARRE Foundation has requested that ASXL studies use a CRID.
A patient can create their unique identifier quickly and share it with researchers easily. This identifier helps to reduce the burden on the patient by reusing their documents and transposing form data from the patient’s original study into subsequent studies, and can be used to facilitate collaborative rare disease clinical research. With patients’ data connected using the CRID identifier and shared across study protocols, better insights can be gained into how a disease develops that is not possible with inaccessible data silos.1 CRID is IRB approved!
Once a CRID received, you can then share this unique ID with Dr. Bianca Russell and/or the ASXL research team at ASXL-CHROMATIN-REGISTRY@mednet.ucla.edu
.
[1] Gerry C. Nesbitt, Patricia A. Murphy: CRID – A unique, universal, patient-generated identifier to facilitate collaborative rare disease clinical research, Informatics in Medicine Unlocked, Volume 31, 2022, 100973, ISSN 2352-9148, https://doi.org/10.1016/j.imu.2022.100973. (https://www.sciencedirect.com/science/article/pii/S2352914822001186)
Bohring-Opitz Syndrome 