Hello Ella,
Unlike some of the clinical trial databases like clinicaltrials.gov or future Europe CTIS, there is not a central repository of registries. Often you have to scour through healthcare associations, non-profit organisations, or trade associations. And often access to these registries is a paid service or subscription. There are some general lists out there, off the top of my head you have groups like NIH
https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries or Europe Pharmacovigilence
https://www.encepp.eu/ but those do not contain everything. In addition, most of these are also related to specific disease conditions or medicinal products, there are fairly rare to find specific medical device registries. From my experience doing post market activities and specifically PMCF, most often patient registries are known by the field of science, i.e. diabetes, MS, ALS, etc., or they are generated by the company themselves using a third party company.
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Richard Vincins ASQ-CQA, MTOPRA, RAC
Vice President Global Regulatory Affairs
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Original Message:
Sent: 19-Jan-2022 05:21
From: Ella Sheiman
Subject: Registries
Dear friends
Hope this one is simple- how do you find registries :)
This is suggested as a good source for PMCF and CER but I am having difficulties to see how it can be easily found and approached.
I am not asking about specific device- just in general
Thank you
Ella
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Ella Sheiman
Haifa
Israel
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