Gerry Nesbitt @ CLIRINX Clinical Research IT

Clinical Research IT 🇺🇸 🇨🇮 for Epilepsy & Rare Diseases
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[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

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. https://t.co/w09X4uQVFi

#RareDisease #CRID #CLIRINX #Research #Genetics #Epilepsy #Liver

[PBC Ireland @PBCIreland]

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

[PBC Ireland @PBCIreland]

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

https://t.co/8kYdATVfNo

[PBC Ireland @PBCIreland]

📣 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.

[PBC Ireland @PBCIreland]

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...

[PBC Ireland @PBCIreland]

🍀 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. https://t.co/k1xLFc1IR6

[PBC Ireland @PBCIreland]

September is PBC Awareness Month...my voice, your voice, our voice...one community: PBC Ireland.

[PBC Ireland @PBCIreland]

The PBC Ireland Patient Registry is now live!

[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

CLIRINX was set-up 13 years ago today!

[PBC Ireland @PBCIreland]

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

[CRID - Unique Patient ID/clinical research @_TheCRID]

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.

[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

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

[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

NIH's eutils service down?? "Search Backend failed: Database is not supported: pubmed" @NIH

[CRID - Unique Patient ID/clinical research @_TheCRID]

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

[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

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

[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

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

[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

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

[CRID - Unique Patient ID/clinical research @_TheCRID]

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 https://t.co/am7PP0p0OR

[Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx]

@TracyDixonSalaz My heartfelt condolences to you and your family.