Rare disease of the bones, joints and blood vessels (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.

At present we are prioritising rare diseases affecting the bone, joints and/or blood vessels (also known as vasculitis). This includes osteogenesis imperfecta, fibrous dysplasia, X-linked hypophosphataemia (XLH), hypophosphatasia (HPP) and vasculitis.

If your rare disease is not currently included in this list, please email us below and we will let you know when we have a plan in place for participants with your rare disease..

THE PATIENT FORUM

Objectives: To enable patients to contribute to the oversight and development of Rudy. To provide representatives to contribute to each governance committee. To discuss issues arising relating to the project, website development and patient views.

Composition: 15 in total, good balance between disease types, parents and patients. Volunteer by contacting rudy@ndorms.ox.ac.uk

Terms of office: For as long as individuals are happy to contribute.

Decision Making: Majority vote of those present. Quorate is 3 patients, with a vote of 2/3. Decision to be reported to members not present, with opportunity to dispute decisions via email.

Agenda Setting: Items raised through other committees, by members of the patient forum, or by the Rudy project team

Reporting: The 15 members will rotate through attendance of the other committees on behalf of the Forum. The Forum sends minutes to the Data Oversight Committee.

Meetings: Quarterly skype calls, further input via email.

Date required

Open request, we will stop recruiting participants to the patient forum when we have 15 members

Organisation

Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences

Contact

For more information, please email rudy@ndorms.ox.ac.uk

or visit the website: www.rudystudy.org

Thank you very much