Discussion in 'General ME/CFS News' started by Andy, Apr 4, 2018.
Well, I've read what Jennie Spotila and Brian Vastag say about the SMCI patient registry but I'm not really any the wiser. Is there a description anywhere of what kind of data they will be collecting, whether it ties in with biomedical research, and who can take part?
I've just noticed it's called a national patient registry - which presumably means it's just for the USA.
Preview of registry - https://solvecfs.org/preview-of-the-new-smci-national-mecfs-patient-registry/
Main biobank & registry page - https://solvecfs.org/solvecfs-biobank/eligibility/
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