This is just a reminder about the RUDY research study here in England. Anyone diagnosed with vasculitis can register and sign up. This link will give you more information but you can contact them yourselves and ask any questions.
Rudy is a study in Rare Diseases of the bone... - Vasculitis UK
The general procedure is that you register and someone will contact you, they will not contact you immediately but probably over the next few days. The RUDY project is run from the University of Oxford. Prof Raashid Luqmani is the lead research clinician
Hope this helps, as far as I know it is only available to patients who are seen in English hospitals.
I will check it out again, maybe try later when I have checked it out. It is a project which will be ongoing over the next few years. They just might be in overload , I posted the same link in the fb vasculitis group yesterday and about 30 members signed up. I will try and find some more info and get back to you jackrussell
I've tried on numerous occasions to get into the RUDY platform. It certainly lets me input my email address and password but then I get an error message saying " Ooops! Something went wrong"..... I actually mentioned this to Professor Luqmani when I saw him last (he's my Rhuematologist) and he said they were on to it. However that was 6 months ago and it seems it's still not working!
I have signed up a while ago. It all went smoothly.
I am sure I filled this in but have not heard from them although it did have an appointment system in which you might receive a call?... Unfortunately I do get a lot of calls for unknown numbers and I block these! I may have inadvertently blocked the call from the team in Oxford? Does anyone know what the number is that they call from? I could unblock the number or possibly call them back in order to be included!. Can you help at all?
Thank you so much 😊