1. 

   Andy Committee Member & Outreach

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   https://solvecfs.org/national-cfs-patient-registry-meet-community-guide-brian-vastag/

    

   Andy, Apr 4, 2018

   #1

   ahimsa, Barry and Trish like this.
2. 

   Trish Moderator Staff Member

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   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.

    

   Trish, Apr 4, 2018

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   Simon M and Andy like this.
3. 

   Andy Committee Member & Outreach

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   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/

    

   Andy, Apr 4, 2018

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   Simon M and Trish like this.

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