Anca associated vasculitis study

Have been asked by my hospital to take part in a study for anca associated vasculitis.which I am more than willing to do .has anyone on here been asked if they would take part .would be good to know

[John_Mills Volunteer]

Is this at Addenbrokkes Hospital Edward13?

[Hidden in reply to John_Mills]

Hi ,no being done at st Thomas's

[Mooka]

Hi Edward

I take part in this survey (or a similar one) at Addenbrookes. I only have to go every six months and they tie it in with my normal appointments. I have only been once and found it a bit uncomfortable as I had to lay flat on my back for a few hours and couldn't move when they were taking their calculations. There is, of course, the usual tests, plenty of blood, urine etc, but we are all used to giving that I think. Someone had to trial the drugs that I am on and I have benefited from that, so I hope someone can benefit from me doing this and a couple of other trials that I have taken part in in the future You are free to withdraw at anytime if you change your mind.

Good luck

Jackie

[Hidden]

Hi jackie thanks for replying . Nice to be able to help .

[JacquiM Volunteer]

I'm doing one that is being carried out by Addenbrooks Edward. I am not a patient with them but was very happy to be part of the study.

Jacqui

[Hidden]

Nice to give something back.. Shame more people don't. I also help out with a charity

[Chris-Bromsgrove]

I am being treated at the QE Birmingham and following diagnosis in 2012 I signed up to two vasculitis research studies (PEXIVAS and DCVAS). I understand Addenbrooks is also involved in these same studies. It is all fitted in around my routine appointments and all it involves is taking some extra bloods and periodically completing questionnaires on the state of my health. No great sweat.

[Derek]

I recently signed up to this study and it's application is similar to Mooka's reply to you, though I'm not sure if the procedure you went through. will be the same for me. I will post my first experience of it in due course.

Derek.

[pinney]

I'm doing the one mentioned at addenbrookes too, bloods taken around my appt times and some forms. Seems pretty straight forward and so good to be part of research for the future, it all helps

[Hidden in reply to pinney]

Hi, yes good to give something back .did take part in another trial few years ago

[anthony01]

I was requested and took my forms to my Doctor and he said "it is kind of you" but said in some manner No? I was sort of shocked as I am diagnosed P-anca. Saying that; I do have a number of other complications which may have not being acceptable or me being a good enough participant? One day hopefully I will be able to give something back.

[Longwilloe]

I'm doing one at Addenbrookes just taking bloods and a few forms to fill out.

[AndrewT]

Yes I'm already 'Signed Up', to a few Studies- most based in the UK- and have been for some years now.

There was a 'Study', a few years, back that was 'Run' by The University College London into 'The Effect Of vitamin C On The Vascular System'. I never had any Information 'back', regarding this, but then I didn't really expect to. (That the Research might Help 'Someone Else' is enough.)

I'm under Addenbrooke's annually, as I had a Kidney Transplant- way back in July 2013. I'm under Ipswich Hospital, for my 'Ongoing Care' thought, I'm NOT too sure if they are Actively involved in Research. I assume that any Relevant Data is being 'Passed On'.

If you 'Offer Your Name', to Studies your either Read About, or are Asked To Join- remembering to 'circulate your Permission To Use Your Data, most important these days- then you may Very well be 'approached'. (Clearly if your in a Waiting Area and, on the Walls/ VDU Screen, they are Asking For Volunteers......)

Good luck and can you let us know 'How You Get On' please? Many thanks, Good Luck and

Merry Christmas, from us All.

AndrewT