XLH UK have collaborated with Triangulate Health to scientifically verify the research evidence regarding the impact of XLH on the lives of XLH patients and those of their families. Titled ‘Exploring Perspectives of People with XLH: Insights into Disease Impact, Daily Challenges and Treatment Views’ the paper was published on December 20th, 2024.

As well as providing valuable input to recent Health Technology Assessments, the analysis confirms the positive impact of treatment with burosumab over other standard treatments. Triangulate conclude “This notable disparity underscores the potential of burosumab in addressing the unmet therapeutic needs of patients with XLH. The analysis also reveals potential associations between burosumab use and key dimensions of patient-reported outcomes. Specifically, individuals on burosumab treatment reported significantly better scores across all EQ-5D quality of life domains compared to those who were not on this therapy.”

This paper adds to the growing body of research evidence that X-linked hypophosphataemia is a chronic, whole life condition which impacts many aspects of life for the patient and their family. You can download the paper here.