Oxford University Hospitals NHS Foundation Trust

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Musculoskeletal Rare Diseases in Adulthood Priority Setting

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Why do we need your help?

Fibrous Dysplasia, Osteogenesis Imperfecta and X-linked Hypophosphataemia are rare conditions which affect the bones.

At the moment we do not know much about the best way to diagnose and treat adults with these conditions. Research is also more difficult because relatively few people are affected and due to the rarity, resources for research often get allocated to larger groups of patients.

This project is being set up to identify unanswered questions about Fibrous Dysplasia, Osteogenesis Imperfecta and X-linked Hypophosphataemia in adults.

Often what research is done is decided by researchers or drug companies without the input of expert healthcare professionals and patients affected. The James Lind Alliance brings together patients, carers and social care professionals in Priority Setting Partnerships to agree what research matters most to patients and health care professionals.

We want to know what questions you think need answering in the areas of Fibrous Dysplasia, Osteogenesis Imperfecta and X-linked Hypophosphataemia.

National survey

You can find out about our survey and contribute your questions by using the link below.

https://www.surveymonkey.co.uk/r/JZ9RDFK

What will we do with your questions?

All the questions we receive will be gathered, grouped by topic and checked against published research to see if they have already been answered. If we find answers to any questions we will publicise those answers on this website.

The questions which have not already been answered will be ranked to find out which are the most important. This process will involve those directly affected by rare bone conditions, carers and health and social care professionals. If you are interested in taking part in this, tell us either when you fill in the survey, or contact us directly.

The result will be a 'Top 10' list of research questions which will be shared publicly. We will then work together with researchers, research funders and where appropriate, the pharmaceutical industry, so that research is conducted to find the answers to these questions.

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