Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx
Clinical Research IT 🇺🇸 🇨🇮 for Epilepsy & Rare Diseases I prefer BlueSky. Find me at: https://t.co/brBoSKB5Co clirinx.com Ireland & USA Joined May 2015-
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Patient-led and parent-led rare disease organizations are increasingly building patient registries. But who really owns the registry? At CLIRINX, we believe patient orgs. should establish, own, and govern their own registries. Your Registry. Your Data. We Do the Rest.™
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CRID has reached 10,000 identifiers! Representing individuals and families across hundreds of rare diseases worldwide. Thank you to everyone who has supported this journey. thecrid.org #RareDisease #CRID #CLIRINX #Research #Genetics #Epilepsy #Liver
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
It's concerning when I see companies mass collecting patient data through so called "surveys" and "patient engagement" with minimal to no governance or ethical oversight, usually with a misleading or deceptive description. #EthicalPatientResearch #StopPatientDataHarvesting
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Big step forward for PBC Ireland. Real-world data. Patient voice. Global impact. A first for patient-led research in Ireland. #PBC #RareDisease #Innovation #CPath #PatientVoice c-path.org/pbc-ireland-pa…
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
📣 Major Announcement for PBC Ireland 📣 Our first academic paper emerging from the PBC Ireland Patient Registry has now been accepted for publication in the peer-reviewed journal Therapeutic Advances in Rare Diseases. This is a first for the PBC community in Ireland.
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Too many people with PBC say clinic visits feel rushed and focused only on blood tests, leaving symptoms like fatigue, itch, and quality of life unheard...
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
🍀 PBC Awareness Day -- Sept 14th, 2025 -- Lá Feasachta PBC 🍀 PBC Ireland is here to support, connect, and advocate for everyone living with Primary Biliary Cholangitis in Ireland. pbcireland.org
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
September is PBC Awareness Month...my voice, your voice, our voice...one community: PBC Ireland.
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
The PBC Ireland Patient Registry is now live!
CLIRINX was set-up 13 years ago today!
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
PBC Ireland has received full ethics approval from the IRB for our new patient registry. This marks a major milestone in our efforts to gather real-world data, support research and improve the lives of people living with PBC in Ireland. More to come! #PBC #PatientRegistry #Rare
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
CRID is the most patient-centric UPI system in research today. It bypasses regulatory complexity by staying out of clinical care and staying inside research domains. It enables ethical reuse of existing patient data and biospecimens and works in all rare disease networks.
CLIRINX delivers the world's most advanced patient-led registry for Primary Biliary Cholangitis (PBC). Developed with @PBCIreland, it sets a new standard for how rare disease data is collected, owned and used by patients, for patients. #PBC #PatientLed #PatientRegistry @_TheCRID
NIH's eutils service down?? "Search Backend failed: Database is not supported: pubmed" @NIH
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
We’ve released the Automatic CRID Creation API, making it easier for 3rd party applications to generate Clinical Research IDs (CRIDs) directly from within their systems. This is a big step toward improving data linkage across research studies #CRID #NoMoreDataSilos #RareDiseases
If you're a rare disease org or academic researcher using the CRID and your IRB needs support in determining if CRID is PHI or not, please contact us to get our statement, “Why the CRID Is Not PHI and Should Be Allowed in De-identified Research Datasets,” to assist in your IRB
The University of Melbourne has recently launched what may become the largest genetic epilepsy natural history study ever conducted, powered by the CLIRINX system! #RareDiseases #NaturalHistoryStudy #Genetics #Epilepsy
After 12 years focusing on the US rare disease market, CLIRINX is expanding in Ireland & the EU. We've deployed AWS infrastructure in Dublin to support local patient registries, natural history studies & clinical trial readiness. #RareDiseases #Ireland #GDPR
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
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 Also on BlueSky thecrid.bsky.social
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