The X-Linked Hypophosphatemic Rickets International Registry (HIC# 0907005408) seeks to register patients with a clinical diagnosis of XLH in order to:
- Compile clinical data on XLH, including age of diagnosis, symptoms, treatment history, etc.,
- Gain a greater understanding of the complex and varied profiles of patients with XLH,
- Improve the global understanding of the disease,
- Determine an accurate assessment of the incidence of XLH in the population worldwide.
In the future, the Registry hopes to serve as a resource for patients and families with XLH, as well as facilitate connections between clinicians, researchers and patients.
For more information or to join the Registry, please send a note to Yale Center for X-Linked Hypophosphatemia.