The XLH Network endorses two registries and encourages the participation of the XLH affected community. The Yale Registry is specific to XLH and Yale researchers. Coordination of Rare Diseases at Sanford (CoRDS) is a registry for rare diseases and can be used, with approval, by researchers nationwide. Information for both registries is shown below.
Yale Center for XLH Registry
The Yale Center for XLH has launched an International Patient Registry. The purpose, goals and contact information are specified in the flyer which can be viewed by clicking on the link below. To go to the official Yale Registry site click here.
Coordination of Rare Diseases at Sanford (CoRDS) Registry
Many organizations that advocate for patients with rare diseases cannot afford to host their own patient registry. Sanford Research provides a secure registry database to organizations such as the XLH Network in an attempt to ensure that researchers interested in studying specific rare diseases can access the patient information necessary to conduct their research.
© 2011, The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers of the F-HYPDRR group, a mailing list for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer.