#patientregistry
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jwmdrc-registries.bsky.social
Congratulations on another engaging d thought-provoking #GeneticsMatters event @kasiapirog.bsky.social 👏 Lots of interest in demo's of our new #PatientRegistry platform collaboration with @newcastleuni.bsky.social Research Software Engineering! Our team mascot Reggie even came along to join in... 🦁
March 2, 2025 at 7:06 PM
helenwalkerncl.bsky.social
I'm proud to represent the UK #DM #PatientRegistry on the #MyotonicDystrophy Global Alliance 💚🎗️

This expert group demonstrates the power and importance of international collaboration in the fight against rare conditions, read more below... 🇬🇧🤝🌍

#RareDiseaseDay
#NMD #DM1 #DM2 #neuromuscular
myotonicstrong.bsky.social Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Feb 28
🌍 This #RareDiseaseDay, the Global Alliance for #myotonicDystrophyAwareness of 60+ orgs unite to advance care & research for #myotonicDystrophy, focusing on: ✅ Educating clinical teams ✅ Enhancing trial readiness 💚 Help us change the future of DM! www.myotonic.org/global-allia...
February 28, 2025 at 4:49 PM
cholangiocarcinoma.bsky.social
Connecting Patients, Accelerating Cures. Be a part of advancing treatments today and tomorrow! Sign up for the #PatientRegistry and advance research from home: tinyurl.com/4tyrefbe

#Cholangiocarcinoma #PatientRegistry #HopeInResearch
December 4, 2024 at 7:41 PM
cholangiocarcinoma.bsky.social

Connecting Patients, Accelerating Cures. Be a part of advancing treatments today and tomorrow! Sign up for the #PatientRegistry and advance research from home: tinyurl.com/4tyrefbe
#Cholangiocarcinoma #PatientRegistry #HopeInResearch
November 26, 2024 at 6:50 PM
christiangebhard.com
I’ll attend the #EuroNDD Workshop in Warsaw in April. Anyone around here going there as well? —> let’s connect!

I’m looking forward to present our work at www.findme2care.de AND hear about all the other projects.

#humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry
A promotional share-pic for the conference. Below the Title there’s a scenic view from Warsaw and the date 09.-10. April and a QR code pointing to the conference program at https://ern-ithaca.eu/events-news/eurondd/program/program-2026/
March 26, 2026 at 1:04 PM
spudislander45.bsky.social
#PEI hospitals over capacity, hospital #emergency departments closing regurlary, #patientregistry for primary care grows to 38,000; walk in clinics providing less than 20 hrs province wide access a week, #HealthPEI steering patients to pharmacies and Maple virtual care

search.app/br9tDdgz3atg...
P.E.I.'s entire health-care system over capacity, hospitals facing increased wait times
search.app
January 17, 2025 at 12:22 PM
cholangiocarcinoma.bsky.social
In honor of survivor and Chief Patient Officer Melinda Bachini's 15 years since diagnosis, we aim to get 15 patients to join the #PatientRegistry by Dec 5. Sharing your medical records can help accelerate advancements and bring us closer to a cure. Sign up & receive a t-shirt! tinyurl.com/4tyrefbe
November 22, 2024 at 2:43 AM
usherireland.org
We need YOUR opinion! We've enlisted Connect Research to carry out a scoping project assessing the need for & design of an USH patient registry in Ireland.
Survey open to over 18s with a connection to Usher syndrome: www.surveymonkey.com/r/P3CZG26

#UsherSyndrome #Survey #Research #PatientRegistry
A woman is holding a sign that says 'Your Voice Matters'. There is also a reminder icon in the image.
December 4, 2024 at 12:44 PM
precogonc.bsky.social
Great work to Atlantic Health System for enrolling their first patient in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in patients not in a #ClinicalTrial. More: bit.ly/4hyZUue #LCSM
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
July 28, 2025 at 3:30 PM
precogonc.bsky.social
Baptist Memorial Health Care in the Mid-South US is now enrolling patients in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in pts not in a #ClinicalTrial. Learn more: bit.ly/4hyZUue
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
January 28, 2025 at 6:22 PM
usherireland.org
We’re proud to share the results of our second major research project!🎉

This landmark scoping study identifies the data and model needed to lay the groundwork for a successful, sustainable Usher syndrome registry in Ireland.

🔗: usherireland.org/ush-registry...

#RareDisease #PatientRegistry
ID: Text in image reads “A landmark report on data collection for Usher syndrome. Our new report identifies the challenges and potential solutions needed to create an Usher syndrome registry that supports access to future treatments and clinical trials, while improving services in healthcare, education, mental health, employment, and accessibility.”. Underneath is an outline of a group of people standing in front of buildings.
September 22, 2025 at 12:30 PM
canadianvic.bsky.social
Health P.E.I. launches revamped patient registry

Automated patient registry aims to reduce delays in health care access, says Health P.E.I. CEO

www.cbc.ca/news/canada/...

#PEI #HealthCare #PatientRegistry
Health P.E.I. launches revamped patient registry | CBC News
Health P.E.I. has launched a revamped patient registry system, aiming to make it easier and faster to connect Islanders with care providers.
www.cbc.ca
February 6, 2025 at 3:01 AM
precogonc.bsky.social
@rutgerscancer.bsky.social is now enrolling patients in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in pts not in a #ClinicalTrial. Learn more: bit.ly/4hyZUue
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
March 13, 2025 at 1:32 PM
precogonc.bsky.social
Mercy Research (@followmercy.bsky.social) is now enrolling patients in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in pts not in a #ClinicalTrial. Learn more: bit.ly/4hyZUue
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
February 26, 2025 at 2:16 PM
precogonc.bsky.social
@penncancer.bsky.social is now enrolling patients in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in pts not in a #ClinicalTrial. Learn more: bit.ly/4hyZUue
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
February 25, 2025 at 6:29 PM
precogonc.bsky.social
Valley Health System in Northern New Jersey is now enrolling patients in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in pts not in a #ClinicalTrial. Learn more: bit.ly/4hyZUue
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
January 29, 2025 at 9:40 PM
precogonc.bsky.social
@virtuahealth.bsky.social in New Jersey is now enrolling patients in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in pts not in a #ClinicalTrial. Learn more: bit.ly/4hyZUue
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
February 10, 2025 at 3:02 PM
precogonc.bsky.social
Great work to UTSW Simmons Cancer Center for enrolling their first patient in #RealWorldData #PatientRegistry PrE1702! This study is evaluating how well osimertinib +/- chemo/IO works to control EGFR+ #LungCancer in pts not in a #ClinicalTrial. Learn more: bit.ly/4hyZUue
Spotlight on Real-World Data Capture: The PrE1702 Registry Study in Lung Cancer
This major new initiative is a unique opportunity for researchers and patients to help build an important real-world data registry of patients with EGFR-mutated non-small cell lung cancer
bit.ly
February 6, 2025 at 3:02 PM
apssupportuk.bsky.social
#APS registry data matter. A Colombian registry-based cohort of 355 adults with thrombotic APS found recurrence risk was highest in the first 2 years; estimated recurrence was 31% at 5 years and 42% at 10. More registry data are vital: pubmed.ncbi.nlm.nih.gov/42706480/ #PatientRegistry
Time to first recurrent thrombosis in adults with thrombotic antiphospholipid syndrome: a registry-based retrospective cohort study - PubMed
The risk of recurrent thrombosis was highest during the first 2 years after the index thrombotic event, supporting an early vulnerable phase and underscoring the need for closer clinical surveillance and secondary prevention. Limitations of the study include its retrospective design, the lack of sta …
pubmed.ncbi.nlm.nih.gov
September 10, 2026 at 2:03 PM
liferaftgroup.bsky.social
Your experience can help drive the next breakthrough in #GISTresearch. Join us to learn how the NEW LRG Patient Registry is turning patient data into knowledge that can make a difference. Register: bit.ly/PRWebinar2026 #GIST #PatientRegistry #RareDisease
August 14, 2026 at 1:56 PM
liferaftgroup.bsky.social
Learn about the new LRG Patient Registry from the LRG team! Register: bit.ly/PRWebinar2026 #PatientRegistry #RareDisease #GISTResearch
August 11, 2026 at 1:34 PM
liferaftgroup.bsky.social
Discover the NEW LRG Patient Registry and learn how its enhanced features are improving the patient experience while supporting the future of #GISTresearch. Register: bit.ly/PRWebinar202...
#PatientRegistry #RareDisease #CancerResearch
August 7, 2026 at 1:36 PM
radeep.bsky.social
🎙️Discover RADeep’s mission and impact!

🔎 Did you know? #RADeep is endorsed by the European Rare Blood Disorders Platform (#ENROL) and the European Hematology Association (EHA)!

👉 Don’t miss it! lnkd.in/d5YeJn55

#RADeepNetwork #RareDiseases #RareAnaemia #PatientRegistry #HealthcareInnovation
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lnkd.in
June 10, 2025 at 2:16 PM
radeep.bsky.social
🔗 Follow us to stay updated on insights, progress, and impact from the RADeep community: bit.ly/4dOrbsf
#RareDiseases #RareAnemia #PatientRegistry #RADs #thalassemia #thal #SickleCellDisease #SCD
RADeep
bit.ly
June 5, 2025 at 9:54 AM
spudislander45.bsky.social
12 years on the patient registry wait list and still no access to primary care. Twice a year I update and check my information with #HealthPEI.
Our #patientregistry went from 7,800 to over 39,000 for a population of 180,000.

#LiberalLeadership
#RobertMitchell #ToddCormier
September 30, 2025 at 9:03 PM