Clinical Research IT 🇺🇸 🇨🇮 for Epilepsy & Rare Diseases I prefer BlueSky. Find me at: https://teapawt.net/t.co/brBoSKB5Co
Ireland & USA
Joined May 2015
- Tweets349
- Following738
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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-partn…
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
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.
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
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
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Is your rare disease group thinking of starting a new Natural History Study or Clinical Trial Readiness Study?
If so, talk to CLIRINX! clirinx.com
#raredisease #epilepsy #clirinx #crid #innovation
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Is your rare disease group thinking of creating a new Contacts Registry? Need to support 70+ languages?
If so, talk to CLIRINX! clirinx.com
#raredisease #epilesy #clirinx #crid #innovation
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Is your rare disease group thinking of starting a new Natural History Study or Clinical Trial Readiness Study? If so, talk to CLIRINX! clirinx.com #raredisease #epilepsy #clirinx #crid #innovation
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Are you a rare disease organization or researcher with valuable datasets or protocols to share? Let us help you to store, organize, and share your rare disease data, unlocking a world of possibilities for research and collaboration! theRDDR.org #raredisease
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
🌟 Feb 9, 3PM EST: Join us for International SCN8A Awareness Day to honor Shay Emma Hammer & all affected by #SCN8A. Let's create a future without SCN8A together. Your support fuels critical research & care. Details: bit.ly/SCN8A-Awareness-Day #SCN8AAwareness #CollaboratingForACure
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Isn't everything?! It's time to be more positive when talking about the coolest thing about OUR culture, Gaeilge!
Get rid of all the chips on shoulders and shame as a nation that we can't speak Irish.
clare.fm/featured-2/ennis-ir…
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Epilepsy & Rare Disease Groups ➡️CLIRINX is your trusted partner for IT solutions tailored to the unique demands of Natural History and Clinical Trial Readiness research studies. 🌿 Visit: clirinx.com