Bad Belzig

Researchers are conducting an international, multicenter, prospective, non-interventional observational registry to study patients with X-Linked Hypophosphatemia (XLH). The goal is to gather data to better understand the treatment approaches, disease progression, and long-term outcomes for both adults and children with XLH. This registry also supports a Post-Authorisation Safety Study (PASS) requested by the European Medicines Agency to monitor safety concerns related to burosumab treatment. Patients of all ages and genders with XLH can join the registry, regardless of whether they are currently receiving treatment. The registry collects data through a web-based system, including baseline, retrospective, and ongoing information from regular visits. Physicians will update patient data approximately every 12 months or more frequently if part of standard care, without any additional interventions required beyond routine clinical practice. Participants or their legal representatives provide informed consent, with assent sought from children when appropriate. Data collection involves recording clinical, radiological, biochemical, and genetic information supporting the diagnosis. Safety monitoring includes tracking treatment-related adverse events over a 10-year period. The registry follows patients over time, capturing comprehensive information to improve understanding of XLH and its management.