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@metabolicsupportuk.org