X Linked Hypophosphatemia Clinical Trial
Official title:
Identification of Longitudinal Burden of Disease and Functional Impairment in X-Linked Hypophosphatemia
Observational study comprising prospective follow up as well as retrospective chart review in order to evaluate the longitudinal course of the disease in XLH patients with a specific focus on functional impairment, physical performance and complications associated with the disease or respective treatment.
This is an observational / non-interventional study in order to assess the longitudinal course of XLH including disease related burden of disease and functional impairment. This is accomplished by both prospective follow up of affected patients as well as retrospective chart review. Evaluation conducted as per clincal routine and specifically evaluated as part of this study will include - baseline documententation / demographic (as obtained from medical records) - general data on XLH-disease specific medical history - physical examination results - functional assessments - technical assessments - quality of life / questionnaires - laboratory evaluations ;