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Research potentials

Kellyb Message
7 Dec 2011, 09:46 PM

FYI - There is an organization called Research Match that connects patients and researchers. They are looking for all kinds of volunteers for both research and clinical trials. It was created through collaborations between a large network of major academic institutions and is funded by the National Center for Research Resources – a component of the National Institute of Health. I registered with them in the hopes that if anyone ever does launch studies on AS, that my info would be out there. (though they keep it secure and ask you permission to release it to any potential researchers first. They didn't have Antisynthetase listed as a condition, but there's a place/comment box you can list it further in the sign up process. If you're interested in adding your data to their collection, go to: researchmatch.org
Melissak Message
8 Dec 2011, 03:10 AM

Thank you so much for the info Kelly. Happy December!!
natalie2581 Message
14 Dec 2011, 02:30 AM

Thank you, I signed up with the site!
Melissak Message
14 Dec 2011, 08:41 PM

I signed up too.
Kellyb Message
14 Dec 2011, 09:00 PM

Maybe if they get enough of us with this oddball disorder it'll peek some interest by someone somewhere!