I need to write something to support the development of an ME/CFS patient registry in my country. I'm interested to know what ME/CFS patient registries exist in the world - I think there's; Solve M.E.'s ones - Australia and the US OMF - US (and beyond?) Germany - I think there's one? And I think some researchers have relatively small registries e.g. NCNED And biobanks of course will have patient data e.g. the UK ME/CFS biobank; the Emerge Australia biobank (which I think makes use of the Solve M.E. registry). I guess there is a patient registry associated with DecodeME too. As far as I know, the existing registries probably consist mainly of people with West European ancestry, so there's an argument for more registries that add to the genetic and cultural diversity of patient data. In my country, we have no ME/CFS specialist doctors, so a patient registry can be a storehouse of knowledge that would otherwise get lost when patients are only being cared for by their local GPs. If anyone has resources/ideas that might help with making the case for a national ME/CFS patient registry, please do post them here. In New Zealand, we already have a Long covid registry, so the idea is that an ME/CFS registry would piggyback off that, making use of much of the work that has already been done to set that up.
Some details on the german biobank/registry: https://classic.clinicaltrials.gov/ct2/show/NCT05778006?term=Scheibenbogen&draw=2&rank=1, https://www.bundesgesundheitsminist...g/handlungsfelder/gesundheitsversorgung/mecfs, https://mecfs-research.org/wp-conte...nielaSchindler_MECFS-Register-und-Biobank.pdf. Here are some details on funding: https://www.gesundheitsforschung-bm...men-des-postinfektiosen-chronischen-15511.php. Of course there are also now the two dutch ones (Lifelines and NMCB) but those are the worst examples and can only serve as an example on how not to do it.
We obviously have all the responses from our participants to our primary questionnaire, and there will be a secondary questionnaire that will explore additional areas of interest, but we have never called our cohort a registry. There is also The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium which is in it's early days. I'm sure you have thought of this but it's probably worth looking at what benefit registries have delivered for other disease areas, given that insufficient time has passed for any ME/CFS one to prove it's worth.
Apparently there is now also an Austrian Biobank setup by the WE&ME Foundation (formerly TEMPI Stiftung) https://www.weandmecfs.org/research...t-austrian-biobank-for-me-cfs-patient-samples.
