Disease burden and quality of life in XLH

We have begun the ‘Disease burden and quality of life in XLH’ study.  The study set up included going to the UK NHS Research Ethics Committee in a voluntary submission, we were granted a favourable opinion from Yorkshire & The Humber - Leeds East Research Ethics Committee.  It is important for us to make sure that any research we are doing is of high quality and meets ethical standards.  We have also now registered the study on ClinicalTrials.gov (ref: NCT04049877) to make sure that we are meeting the standards expected of clinical research.  


It has been an exciting start, partnered with Metabolic Support UK, we have recruited 8 people so far to complete the quality of life measures and in-depth semi-structured qualitative interviews.  The ‘interview’ word can sound quite scary as it has quite stressful connotations (job interview anyone!) however in reality, this type of research interview is more about having a chat with a researcher about experiences of living with XLH.  It gives participants a chance to tell their story and explain the impact the condition has had on their day to day lives.  

Importantly, we have presented the study at the MSUK Annual Conference. This was an interesting day where we learned about NICE approval processes and the importance of patient experiences to decisions.  The XLH workshop in the afternoon gave us a chance to meet with people with XLH and gain a greater understanding of what is important to them, as well as an opportunity to present our study.  Thank you to XLH UK for allowing us the slot and supporting our recruitment.  

Please contact [email protected] to get involved in the study