More data sharing, less data silos. I prefer BlueSky . Find me at: https://teapawt.net/t.co/UtXFYW1OZx
Global
Joined May 2021
- Tweets91
- Following649
- Followers296
- Likes153
CRID - Unique Patient ID/clinical research retweeted
CLIRINX builds the research. CRID connects it. #RareDisease #Research #EDC #PatientIdentity clirinx.com & TheCRID.org
CRID now contains participants representing hundreds of different rare diseases and genes, creating opportunities to connect research studies, patient registries and clinical trials that would otherwise remain isolated.
1
77
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
🤖 Made with AI
21
CRID - Unique Patient ID/clinical research retweeted
For those living with liver disease, looking after your liver is part of everyday life.
For everyone else, it's something we should think about more.
More of what your liver loves. Less of what stresses it. Stay active.
@WorldLiverDay @EASLnews
#WorldLiverDay
CRID - Unique Patient ID/clinical research retweeted
For those living with liver disease, looking after your liver is part of everyday life.
For everyone else, it's something we should think about more.
More of what your liver loves. Less of what stresses it. Stay active.
@WorldLiverDay @EASLnews
#WorldLiverDay
CRID - Unique Patient ID/clinical research 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…
We are planning to carry out a major IT upgrade on Friday, Feb. 20th, 2026. During this time, the CRID website will be unavailable, approximately from 4:00am EST to 6:00pm EST.
10
CRID - Unique Patient ID/clinical research 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.
CRID - Unique Patient ID/clinical research 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...
Just a sample of the organizations using CRID:
Simons Searchlight
CASK Gene Foundation
APBD Research Foundation (APBDRF)
Cure Mito Foundation
Leigh Syndrome Patient Registry
Cure GM1 Foundation
GLUT1 Deficiency Foundation
KCNQ2 Cure Alliance
more...
3
1
32
cont...
Hope for HIE (My HIE Journey Registry)
Stiff Person Syndrome Research Foundation (SPSRF)
ReNU Syndrome Foundation (RNU4-2 / ReNU)
MED13L Foundation
Cri Du Chat Research Foundation
ARRE Foundation (ASXL-related disorders / Bohring–Opitz/Shashi–Pena)
SETBP1 Society
more...
27
cont...
KCNT1 Epilepsy Foundation / KCNT1 community
FamilieSCN2A Foundation
Cure SYNGAP1
Cure GRIN Foundation
DLG4 SHINE
CSNK2A1 Foundation (Okur–Chung Neurodevelopmental Syndrome Foundation)
Koolen-de Vries Syndrome Foundation
KMT2C Foundation
more...
59
CRID - Unique Patient ID/clinical research 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
CRID - Unique Patient ID/clinical research retweeted
September is PBC Awareness Month...my voice, your voice, our voice...one community: PBC Ireland.
CRID - Unique Patient ID/clinical research 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
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.
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
