CRID - Unique Patient ID for rare disease clinical research
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thecrid.bsky.social
CRID - Unique Patient ID for rare disease clinical research
@thecrid.bsky.social
https://TheCRID.org
More data sharing, less data silos. CRID is a service that enables parents/patients create their own unique universal ID for clinical research.
300+ genes, 6500+ rare disease patients — CRID is growing! The CRID Clinical Research ID database is helping to unlock data silos like never before. #Genomics #Genes #ClinicalResearchID #CRID #UniquePatientID #RareDiseases
March 31, 2025 at 2:04 PM
February 28, 2025 at 12:24 PM
CLIRINX is committed to keeping CRID operational because it plays a critical role in advancing rare disease research. The platform remains highly active and continues to provide invaluable support to researchers, patients, and non-profit organizations in the rare disease community.
February 9, 2025 at 1:32 PM
- CRID facilitates collaboration/data sharing in rare disease research by providing a unique, universal identifier.
- It reduces patient burden, such as "survey fatigue".
- Adoption of CRID globally could accelerate research progress by overcoming geographical and institutional barriers.
January 23, 2025 at 8:38 PM
CRID could benefit greatly from additional funding, but it seems unlikely to receive support from the EC Horizon Europe Framework Programme (HORIZON). Sometimes, particularly with rare diseases, commercial sustainability should not be a determining criterion. #EndDataSilos #Horizon #EC
November 27, 2024 at 10:55 AM
CRID IDs will now contain a check-digit (effective Nov 19th, 2024). The check digit is calculated from all the other numbers in the CRID and helps to confirm the integrity of the CRID ID.
November 20, 2024 at 6:32 AM
CRID can now supply a bulk list of anonymous CRID IDs for rare disease research. These CRIDs are not associated with an email address or a person's name/sex/DoB.
These could be used by tag a useful dataset or specimen that's unknown/anonymous.
Contact: crid@clirinx.com thecrid.org clirinx.com
November 19, 2024 at 5:58 PM
CRID - Clinical Research ID. A unique patient identifier for rare disease folks. #raredisease #uniquepatientid
November 19, 2024 at 5:47 PM