Volunteers Needed For A Research Study Investigating Disease Progression and Quality of Life in XLH
We aim to investigate disease progression and quality of life of adults living with a diagnosis of XLH.
- 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.