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blu4runner
11-26-2014, 05:14 AM
There is a new research group called Vasculitis Patient-Powered Research Network that is conducting studies regarding vasculitis. The goal is : The V-PPRN is a network that will inspire, plan, and conduct new vasculitis clinical research studies.
The V-PPRN is poised to:


Drive new vasculitis clinical research studies
Engage patients in new ways:

Directly involve patients in the design and selection of research topics
Significantly increase the number of patients eligible to participate
Enroll a geographically diverse patient population
Broaden the disease spectrum by enrolling patients with many different types of vasculitis



There are some great DR's involved with research in this group. My DR, Peter Merkel, is a co-founder of the group.

I registered and completed the questionnaire it only takes 10-15min and any info that can help with research of this disease is worth considering.

Webpage to register or get info is :https://www.vpprn.org/index.htm

ozterry
11-26-2014, 08:23 AM
Given that it is restricted to US residents, it is not terribly geographically diverse, but every research effort helps, so I wish them luck.

NikkiNicole
11-26-2014, 09:40 AM
I joined. Hopefully they will expand it as I see more people from out of the US on this forum! That's just us Weggies too. Who knows about all the other Vasculitis diseases.

lag713
11-27-2014, 10:56 AM
The VPPRN seems like a wonderful opportunity to participate in research that may benefit us! I also recommend participating in the National Databank for Rheumatic Diseases. They are looking at a wide number of diseases including wegeners. The NDB have surveys twice a year that take about 45-60 minutes to complete.

National Data Bank for Rheumatic Diseases | You can help arthritis research (http://www.arthritis-research.org/)
Rheumatic diseases | National Data Bank for Rheumatic Diseases (http://www.arthritis-research.org/participate/rheumatic-diseases)