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What is Rudy?

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, Rudy aims to transform clinical care for participants through patient driven research.

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Which rare diseases are we interested in?

At present we are prioritizing rare diseases affecting the bone, joints and/or blood vessels (also known as vasculitis). The number of diseases we are interested in is growing as more researchers join the network. If your rare disease is not currently included in this list, please register on the website anyway. We will email you when we have a plan in place for participants with your rare disease.

How far have we come?

So far we have 532 participants that have fully consented to the study - and this number is growing daily. We now have a total of 4674 Questionnaires completed.

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What will I have to do?

Because the study aims to collect information over a five year period, we are aiming to make your involvement as simple and flexible as possible. You can decide what parts of the study you want to be a part of, and how you would like us to contact you: whether by letter, telephone, email or text. You will be free to change your mind about your participation and your preferences at any time during the study.

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Who are we?

We are a national network of doctors, researchers, patients and families working to together to improve our understanding of rare diseases and develop new tests and treatments.

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Who funds us?

The NIHR Rare diseases of Bone, Joint and blood vessels is funded by a partnership between the NIHR Rare Diseases Translational Research Collaboration and the Oxford NIHR Musculoskeletal Biomedical Research Unit, University of Oxford

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How can I find out more?

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.

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