UKIVas study: Are any of you taking part in... - Vasculitis UK

Vasculitis UK

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UKIVas study

jeannette65 profile image
5 Replies

Are any of you taking part in the UKIVas study? I have been asked to participate by my hospital. It is a vasculitis susceptibility and patient outcomes study.Would appreciate any comments. Thankyou

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jeannette65 profile image
jeannette65
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zoe69 profile image
zoe69ModeratorVolunteerVasculitis UK

Hi,

 I was asked by my rheumy when I got diagnosed and accepted happily. The interview with the nurse took 30 minutes and they took blood samples and gave me my number ( your doctor and the nurse know your name and send the information but for the study you are just a number).  Then they follow your health journey for 3 years. 

The illness is rare and studies will help other people in the future. I think it is very important to participate but this my personal opinion, it is up to you.

Suzym2u profile image
Suzym2uModeratorVasculitis UK

Its good to hear more and more hospitals are encouraging patients to take part in the UKIVAS registry. These links to the Vasculitis UK website might just explain more Jeanette

vasculitis.org.uk/professio...

vasculitis.org.uk/professio...

UK Vasculitis Registry was originally co-funded by Vasculitis UK. if you follow this link it will give you some more info. vasculitis.org.uk/professio...

But as Zoe says it is personal choice.

all the best

Susan

AndrewT profile image
AndrewT

I believe that I have 'signed up' for a few studies, over the years, some seem to come back sometimes-others are never heard of again.  I was a Volunteer, for a 'How Vitamin C affects the Vascular System-years ago now.  I was even promised a Set of Results-that was at the old UCH.

So, in answer to your question, it is very possible yes.

Enjoy the warmer weather Jeanette

AndrewT

lollypocket profile image
lollypocket

Yes, I was asked last year, but have only just been signed up to it.

Justjudes3824 profile image
Justjudes3824

Yes I have just signed up for the UKIVas study 

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