Patient Registry

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.

 Yale XLH Patient Registry

 

 

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.

Sanford Research is committed to finding cures and advancing therapies into rare diseases. To further this mission, they established the Coordination of Rare Diseases at Sanford (CoRDS) – a national rare disease registry designed to accelerate research into these rare conditions.
CoRDS collects and stores basic contact and clinical information on individuals of any age who have been diagnosed with a rare disease (undiagnosed individuals are also eligible for enrollment).
 
Purpose
Research is an important way to improve the understanding of rare diseases which may help develop effective treatments. Research into rare diseases is often limited by lack of information and the relatively small number of participants eligible for clinical trials or research studies.
Establishing a central registry of individuals with confirmed diagnoses of any rare diseases is an innovative way to accelerate rare disease research. Researchers nationwide with the appropriate approval can have access to de-identified clinical information from the CoRDS registry that may be helpful to their research.
Individuals enrolled in CoRDS will be informed of clinical trials and research studies for which they may be eligible. 
Goal
To collaborate efforts with rare disease patient advocacy organizations, healthcare providers, researchers, and individuals to create a central resource that connects scientists conducting research studies with individuals interested in participating in the clinical trial or research study.
Please review the CoRDS Brochure and see the FAQ page to learn how you can join the CoRDS initiative.
Have Questions? Please Contact: 
Liz Donohue  
Director, Coordination of Rare Diseases at Sanford
Sanford Research
2301 E 60th Street North 
Sioux Falls, SD 57104

 

© 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. 

Last modified Jul 2, 2012

NewsThe XLH News Blog

    • XLH Network Survey
    • The XLH Network is currently in a year-long process of working to grow our organization and better meet the needs of the XLH community. As part of our initiatives, we have designed a survey in hopes of getting feedback from our members. Your feedback…
    • 2013 Rare Disease Day Symposium
    • In February the 2013 Rare Disease Day Symposium was held in California at the Sanford-Burnham Medical Research Institute.    This year's topic was "Calcification Disorders - from Hardened Arteries to Soft Bones".     Amo…
    • New National Institutes of Health Research Study
    • NIH Research Study: Open-label Dose-titration Study of the Tolerability and Efficacy of Cinacalcet to Treat Fibroblast Growth Factor 23 (FGF23)-mediated HypophosphatemiaPrincipal Investigator: Dr. Rachel Gafni, MDSponsoring Institute: Craniofacial and Ske…
    • Scientific Advisory Board member wins award at ASBMR
    • Michael Econs, XLH Network Scientific Advisory Board Member (SAB), was awarded the Frederic C. Bartter Award for outstanding clinical investigation in disorders of bone and mineral metabolism at the American Society for Bone and Mineral Research…

Stay Connected

We comply with the HONcode standard for trustworthy health information: verify here.

Site provided by Vibrant Creative