Anyone taking part in MPN progression research?

Posted by sdcgcarroll @sdcgcarroll, May 12 11:18am

Has anyone signed up to take part in the MPN progression research? Just providing your medical info, treatments, ect and letting them follow your journey? Any concerns with that? I’m seriously considering signing up.

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nohrt4me (Jean) | @nohrt4me | May 13 10:12am

Great idea! When I was first diagnosed, I signed papers allowing the clinic to add all my info to a database aggregating data on MPN patients. I assume the clinic is still participating, but this reminds me to ask about it when I see them this fall.

alikay | @alikay | May 14 9:17am

I have! My oncologist looked it over and approved.
FYI. There are some problems with the site with the date of birth not loading etc but it all is working AND the administrator of the site logistics has great communication as far as the links working and getting you registered. I had to approve the link for my records twice but all is good now !!

Colleen Young, Connect Director | @colleenyoung | May 25 7:54pm

@sdcgcarroll, is this the project you are referring to?
- The Progression Research Network (PRN) https://mpnresearchfoundation.org/progression-research-network/

sdcgcarroll | @sdcgcarroll | May 25 10:06pm

Yes

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