RESEARCH STUDY: DISEASE PROGRESSION AND QUALITY OF LIFE OF ADULTS LIVING WITH XLH

Volunteers needed for a research study investigating disease progression and quality of life in X-Linked Hypophosphataemia (XLH).

We aim to investigate disease progression and quality of life of adults living with a diagnosis of XLH.

Participants must:
-Have a diagnosis of XLH
-Be aged 28 or over
-Be able to read and converse in English

Participants will be asked to:
-Take part in a study interview discussing their experience of living with an XLH diagnosis, taking approximately 1 to 1.5 hours.
-Complete a series of quality of life questionnaires taking approximately 30-40 minutes each time.

This study involves a total of 5 telephone calls over 12 months with a researcher from Medialis (an independent research company https://medialis.co.uk/).

If you would like to receive more information on the study, please email Jess on jess@metabolicsupportuk.org