Help develop a testing tool: EULAR and ARC... - Vasculitis UK

Vasculitis UK

7,783 members6,757 posts

Help develop a testing tool

Suzym2u profile image
Suzym2uModeratorVasculitis UK
2 Replies

EULAR and ARC are conducting research to develop a tool for determining the efficiency of treatments for patients with Vasculitis.

They are looking for people who have AAV Vasculitis Granulomatosis with Polyangiitis and Microscopic Polyangiitis.

vasculitis.org.uk/news/help...

Written by
Suzym2u profile image
Suzym2u
Moderator
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Nadine99 profile image
Nadine99

I showed this to my husband and he registered but we had trouble understanding what was being asked of him, so we just came out of it. For example, the second question was just 'Death', well how can that be anything but Critical? and couldn't explain the positive & negative questions of 1, so we just gave up. Sorry.

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to Nadine99

No problem ... it’s not an easy survey to complete I appreciate that , but we did not create it....

.Apparently over 100 patients have completed it in the USA....

You may also like...

I am seeking help from vasculitis patients

seeking help from vasculitis patients. I have one of the types vasculitis, Wegener’s...

Coping Strategies for Waiting to be Seen

diagnosed with granulomatosis with polyangiitis (GPA) last month after 6 months of testing /...

Evaluation of Rituximab March 2013

in the treatment of Wegener's Granulomatosis (GPA) and Microscopic Polyangiitis If you have not...

What blood tests should I expect my GP to request?

profile). PMRpro and DadCue have kindly suggested I look into vasculitis. After tapering off...

EGPA/Churg-Strauss? New Member, recent Diagnosis

diagnosis in December 2016 and have been in treatment since. Vasculitis affecting both of my legs,...