CBC Prince Edward IslandMay 29
PC MLA wants Islanders 65-plus to be fast-tracked to top of P.E.I.'s patient registry
The Progressive Conservative MLA for Georgetown-Pownal is looking to the government to change the way people get off of P.E.I.’s patient registry.
https://www.cbc.ca/news/canada/prince-edward-island/pei-health-registry-older-islanders-9.7215849?cmp=rss
CBC MontrealMay 28
Quebec hits patient registry target early — though many won't get a dedicated doctor
Quebec has hit its target to register half a million new patients with access to primary care, reaching the milestone more than a month ahead of the deadline laid out in the agreement with family doctors. But opposition critics say questions about access to care remain.
https://www.cbc.ca/news/canada/montreal/quebec-doctor-access-to-care-9.7213984?cmp=rss
CBC OttawaMay 28
Quebec hits patient registry target early — though many won't get a dedicated doctor
Quebec has hit its target to register half a million new patients with access to primary care, reaching the milestone more than a month ahead of the deadline laid out in the agreement with family doctors. But opposition critics say questions about access to care remain.
https://www.cbc.ca/news/canada/montreal/quebec-doctor-access-to-care-9.7213984?cmp=rss
CBC Prince Edward IslandMay 20
P.E.I. losing another doctor in July, adding nearly 1,400 people to patient registry
Prince Edward Island is losing another doctor, adding nearly 1,400 people to the provincial patient registry.
https://www.cbc.ca/news/canada/prince-edward-island/pei-doctor-leaving-kensington-9.7206378?cmp=rss
Christian GebhardMar 26

I’ll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? —> let’s connect!

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

Also: I’ll be co-hosting an educational session and roundtable discussion titled „Building Patient Registries under the GDPR – The Good, the Bad and the Ugly“ —> there are a few seats left for conference attendees!

#humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry

AhimsaJul 22, 2023

From OMF (Open Medicine Foundation):

"Do you want to support patient communities and promote scientific research?

Join Open Medicine Foundation’s 'Study ME'! This patient registry connects you with researchers conducting ME/CFS, Long COVID, Fibromyalgia, and other post-infection illness research."

Registry link:

https://www.omf.ngo/studyME/

#MEcfs #LongCovid #Fibromyalgia #NEISvoid #Research #PatientRegistry

StudyME

StudyME: A comprehensive resource for ME/CFS research, providing valuable information and study opportunities.

Open Medicine Foundation
AhimsaJun 10, 2023

From Open Medicine Foundation:

"Are you interested in advancing research for ME/CFS, Long Covid, Fibromyalgia, and other post-infection illnesses?

Join OMF's #StudyME, a participant registry that connects you with researchers conducting studies in these areas!"

https://www.omf.ngo/studyME/

#MEcfs #LongCovid #Fibromyalgia #Research #PatientRegistry #OMF

StudyME

StudyME: A comprehensive resource for ME/CFS research, providing valuable information and study opportunities.

Open Medicine Foundation
Alan KotokJan 19, 2023

Real-World Data Shown to Match Eye Disease Trial Results

#Research findings show data in patients' electronic #health records can be collected and analyzed to replicate results from late-stage clinical trials of an #eye disease #biologic drug.

https://sciencebusiness.technewslit.com/?p=44351

#News #Science #Business #MacularDegeneration #WetAMD #ClinicalTrials #RealWorldEvidence #Algorithms #Analytics #PatientRegistry #Ophthalmology #ElectronicHealthRecords

Real-World Data Shown to Match Eye Disease Trial Results

Research findings show data in patients' electronic health records can be collected and analyzed to replicate results from late-stage clinical trials of an eye disease biologic drug.

Science and Enterprise