XLH Disease Monitoring program

Ruby with her mom, Heidi, living with XLH

The X-linked hypophosphatemia (XLH) Disease Monitoring Program (XLH-DMP) is a way to follow how your condition is affecting you and other people with XLH. It is also a way to guide researchers in designing clinical trials and developing potential treatments for XLH.

The in-clinic XLH-DMP is a global, multicenter study of people with XLH. The XLH-DMP will collect and track health information from children and adults with XLH.


The DMP study will evaluate how XLH progresses over time and how it affects people in different aspects of their lives, as well as how the therapy affects XLH symptoms. The DMP can help patients, healthcare professionals, regulators, and researchers understand how XLH progresses with or without treatment. For patients who do not have access to the in-clinic DMP, there will be an opportunity to be part of the program through a phone application.


Note: The in-clinic disease monitoring does not include any experimental treatments or procedures and is not a clinical trial.

In-clinic X-linked hypophosphatemia drug monitoring program