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CRID - Unique Patient ID for rare disease clinical research

@thecrid.bsky.social
128 followers 318 following 9 posts

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.

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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 31/03/2025
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
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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 28/02/2025
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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 09/02/2025
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.
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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 23/01/2025
- 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.
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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 27/11/2024
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
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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 20/11/2024
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.
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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 19/11/2024
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
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CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social · 19/11/2024
CRID - Clinical Research ID. A unique patient identifier for rare disease folks. #raredisease #uniquepatientid
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