• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Patient database for those of us who are willing to participate in Research?

Wasbeer

Wasbeer

Messages
80
Location
Amersfoort, Netherlands
Hello everybody,

I'm just throwing up a ball here, but when I listened to yesterday's webinar and heard people say that finding cohorts with well-defined patients was a problem, and that there was need of multi-city, multi-continent research for XMRV, I thought of Phoenix Rising. Maybe we could find a way to create a database here with people who are, under their own conditions ofcourse, willing to participate in research programmes. Ofcourse we would have to think about a way to deal with privacy-issues, and there are other practical issues to consider before organising this.

On the other hand: we are a multi-city and multi-continent community and most of us here probably have a pretty good idea if they would meet the Canadian Consensus Criteria, or if they 'only' meet the Fukuda Criteria (no disrespect in any way intended). Couldn't that be very useful to the scientific community trying to solve this puzzle? Or is my plan incredibly naive because of things i cannot oversee right now?

:D Tell me what you think!
 
S

Sean

Senior Member
Messages
7,378
The membership of this forum is not randomly selected from among patients. Or at least, we don't know if it is or not.

Proper studies need a degree of randomness in the patient selection.
 
J

jspotila

Senior Member
Messages
1,099
Wasbeer said:
Hello everybody,

I'm just throwing up a ball here, but when I listened to yesterday's webinar and heard people say that finding cohorts with well-defined patients was a problem, and that there was need of multi-city, multi-continent research for XMRV, I thought of Phoenix Rising. Maybe we could find a way to create a database here with people who are, under their own conditions ofcourse, willing to participate in research programmes. Ofcourse we would have to think about a way to deal with privacy-issues, and there are other practical issues to consider before organising this.

On the other hand: we are a multi-city and multi-continent community and most of us here probably have a pretty good idea if they would meet the Canadian Consensus Criteria, or if they 'only' meet the Fukuda Criteria (no disrespect in any way intended). Couldn't that be very useful to the scientific community trying to solve this puzzle? Or is my plan incredibly naive because of things i cannot oversee right now?

:D Tell me what you think!
Click to expand...

You can also sign up for the SolveCFS BioBank. Your clinical information will be collected and securely stored. When a study opens that needs patients like yourself, you receive a blood collection kit in the mail. Most labs will do the blood draw for free, so there is no cost to you.

More information, including consent materials, are available at http://www.solvecfs.org

And we need healthy controls, too! Family members, friends, neighbors, etc. are all eligible.
 
You must log in or register to reply here.