Current Research Studies

X-linked Hypophosphatemia Disease Monitoring Program – (XLH-DMP)


What is the goal of the study?

The XLH-DMP is a long-term prospective outcomes study aiming to collect information on the disease for up to 10 years. Patients not taking burosumab will serve to illustrate the natural history of XLH. The patients who rollover from the clinical trial setting will have at least 2 to 3 years of burosumab treatment and will provide long-term information on safety and effectiveness of burosumab. The patients initiating treatment with burosumab via his/her clinician decision will capture information illustrating the pharmacodynamics and clinical response of burosumab in a real-life setting. Including pediatric patients is important in order to assess and/or confirm long-term effect on growth for which years of observation are necessary to address the impact of burosumab on the near final height. In adult patients, long-term effectiveness in fracture healing and prevention of new fractures or pseudo fractures is also relevant for describing long-term benefits of burosumab treatment.

Who can participate in the study?

Please contact the study team listed below to learn more.

Study Team: