Survey: X-Linked Hypophosphataemia in Adulthood

Are you affected by X-linked Hypophosphataemia?  Oxford University Hospitals NHS Foundation Trust would like to hear from adults with this condition via a survey to find out, and answer, your questions

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.

We know that many people with these rare bone diseases have important unanswered questions and we want to find out what they are. We are focusing on the treatment and long-term management of the listed conditions. We will also collect your questions about diagnosis and then review how to deal with them depending on the number and type of responses received.

Your participation will help to identify unanswered questions about these rare diseases at a time when new technologies and approaches to understanding them are becoming available.

Please click here to get involved and contribute your questions!   

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.