Open Australia: AusMe Registry (ME/CFS, Long COVID and healthy volunteers)

Dolphin

Dolphin

Senior Member (Voting Rights)
@Simone, when it says 'building on the You+ME registry', what does that mean? If people are already registered with the Australian version of that registry, do they need to re-register? Will that existing data remain in the registry? Is there are ongoing connection with the US You+ME registry to standardise inputs, or are the registries diverging?

Edit - I see that Solve M.E. is moving on from You&ME itself. Solve Together
 
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Hutan said:
@Simone, when it says 'building on the You+ME registry', what does that mean? If people are already registered with the Australian version of that registry, do they need to re-register? Will that existing data remain in the registry? Is there are ongoing connection with the US You+ME registry to standardise inputs, or are the registries diverging?

Edit - I see that Solve M.E. is moving on from You&ME itself. Solve Together
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Great questions!

I’ll try to address them as best I can (I’m not working on the registry):

- Building on the registry: expanding on the registry to include young people (aged 12+), people with Long COVID, and people with ME/CFS as well as Long COVID.
- Existing registry participants will need to sign up and provide consent again (they will receive an email invitation).
- No data will be lost. When existing participants sign up to the new registry, the data from the old and new registry will be connected via their email address.
- AusME is a stand alone registry, not connected with Solve. Many of the inputs have remained the same as the old registry, though some have changed.

There’s more info on the website: https://www.emerge.org.au/ausme/
 
Welcome to the 100th edition of Emerge Australia’s Research Digest! To commemorate the milestone of our 100th issue, we’re shining a light on Emerge Australia’s own contribution to ME/CFS (and now Long COVID) research, with the launch of AusME, the new Australian ME/CFS and Long COVID Registry and Biobank.
https://www.emerge.org.au/researchdigest/research-digest-26-10-2023/
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https://twitter.com/user/status/1719161830365442519

https://twitter.com/user/status/1719166146480365973
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The AusMe Registry is Up and Running!

On October 19, we launched the AusME Registry. Designed as a way to bring the information and data of the You+ME database to Australian shores, it will provide crucial support to Australian medical researchers with an aim to advancing knowledge and uncovering essential diagnostics and effective treatments for people with ME/CFS and Long COVID. With over 400 people joining up in the first two weeks alone, and an average of 30 per week since, this is great way to help develop research into ME/CFS and Long COVID.

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Most people can participate. You must be:

· A person aged 12+ with ME/CFS (with or without having had a COVID infection)
· A person aged 12+ with Long COVID
· A healthy volunteer aged 12+ (with or without having had a COVID infection)
Behind every data point, there's a person, a story, and a chance for a better tomorrow.

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VISIT AND SIGN UP TO AUSME TODAY https://ausmeregistry.org/

https://twitter.com/user/status/1743375271007293925
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