We now have 2808 people taking part

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What Is Rudy? Image of lightbulb

What is Rudy?

Rudy is a study in Rare diseases. 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?

Which rare diseases are we interested in?

We are expanding to include all rare diseases. 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.


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How far have we come? Image of diagram

How far have we come?

So far we have 2808 participants that have fully consented to the study - and this number is growing daily. We now have a total of 37052 Questionnaires completed.

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What will I have to do?

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? Picture of doctor

Who are we?

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

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Who funds us? Picture of Money

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

Patient Forum. Picture of person speaking

Patient Forum

The patient forum is made up of RUDY participant volunteers who act as a link between RUDY study and its participants, their families and carers. The members of the forum include parents of children with a rare disease as well as adults with a rare disease.

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How can I find out more? Picture of raised hand

How can I find out more?

Our Library will give you an idea of the kind of work we do as a research study. If there are any questions you can’t find answers to 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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In association with:

Oxford University Logo NDORMS Logo NIHR Logo Vasculitis UK Logo Brittle Bone Society Logo Alkaptonuria Society Logo Fibrous Dysplasia Support Society Logo Findacure Logo XLH Network Logo Climb Logo HMSA Logo LGD Alliance Logo Myeloma UK Logo Congenital Anaemia Network Logo The Aplastic Anaemia Trust Logo