Rudy is a study in Rare Diseases of the bone... - Vasculitis UK

Vasculitis UK
6,343 members5,554 posts

Rudy is a study in Rare Diseases of the bones, joints and blood vessels. Headed up by a research team at the University of Oxford

Suzym2u
Suzym2uModerator
20 Replies

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.

research.ndorms.ox.ac.uk/rudy/

20 Replies
oldestnewest
PMRpro

Well Suzy - their website doesn't make it particularly obvious how to email them since if you click on the email link it offers a choice of rheumatology or PEC. I have called the phone number twice and been redirected to the switchboard who appear to have no idea what the RUDY study is.

Reply
Suzym2u
Suzym2uModerator

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.

Susan

Reply
jackrussell
jackrussell
in reply to Suzym2u

filled in the registration form clicked -------nothing, form ( already filled in )comes up again,---and again----and again. Nothing wrong with the filled in form and no suggestion that there is, so have given up.

Reply
Suzym2u
Suzym2uModerator
in reply to jackrussell

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

Susan

Reply
PMRpro
PMRpro
in reply to Suzym2u

Wasn't for me - I wanted to find out more before passing it on to others. I couldn't.

Reply
Suzym2u
Suzym2uModerator
in reply to PMRpro

I think it has already been shared with other groups such as Genetic Alliance, Behcets Society and PMRGCAUK . Prof Luqmani discussed the RUDY project at the BSR Autumn Conference this last week to ask Rheumatology doctors and Consultants to encourage their patents to register and join.

Susan

Reply
PMRpro
PMRpro
in reply to Suzym2u

May have been shared with PMRGCAUK - but it doesn't appear to have been disseminated to the more distant parts of the UK!

Reply
Chris-Bromsgrove

It seems to be working OK at the moment. I signed up without any problem

Chris

Reply
Suzym2u
Suzym2uModerator
in reply to Chris-Bromsgrove

that's good to hear, Chris, no one had any problems yesterday. John signed up a little while ago and received a telephone call about 5 days later, asking some questions.

Susan :-)

Reply
PuddingPack

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!

1 like
Reply
Suzym2u
Suzym2uModerator
in reply to PuddingPack

it seems to working for most people but not for a few, anyway John is seeing Prof Luqmani tomorrow so will have a word ;-)

Reply
Hidden
Hidden

I have signed up a while ago. It all went smoothly.

1 like
Reply
wobblypat

I see that Rudy was first posted some three years ago, but I have only just found the site. Are you still recruiting?

Reply
Suzym2u
Suzym2uModerator
in reply to wobblypat

Yes they are 😊

Reply
wobblypat

I would love to sign up. I think my diagnosis of cns vasculitis makes me suitable and I would love to learn more about the disease and perhaps being in some small part instrumental in helping the research.

1 like
Reply
Suzym2u
Suzym2uModerator
in reply to wobblypat

Have you taken part in the new survey that has just been posted in the community?

Reply
Maria_B

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 😊

Reply
Suzym2u
Suzym2uModerator
in reply to Maria_B

We have a lot of information about Rudy in the Participant Information Sheet, that hopefully will answer most of the questions you may have. If you don’t find an answer then please send us an email or call us on 07775 541615 / 01865 223407 and we will get back to you. This is from the RUDY website

Reply
Maria_B
Maria_B
in reply to Suzym2u

Thanks for the message Suzym2u!. I will try the number and compare against blocked numbers on my phone!

Thanks again

Reply

You may also like...