Registry tracking bone disease outcomes in children and adults

This is a long-term registry — essentially a patient database — that collects health information from people of all ages who have X-linked hypophosphatemia (XLH), a rare genetic condition that affects how the body handles phosphate and impacts bone health. Researchers will track your medical history, current treatments, and how you're doing over time to understand how XLH develops and progresses, and how well different treatments work. This information will help doctors learn more about the condition and improve care for future patients.

XLH is a rare condition, so doctors need to gather real-world information from as many patients as possible to understand its long-term effects and how people respond to treatment. This registry also helps monitor the safety of available medications used to treat the condition.