The XLH Network, Inc. recognizes both the scientific value of patient registries, which may be of benefit to all Network members, and the privacy concerns of individual members. Prospective participants in a patient registry should always carefully review the informed consent documentation, and discuss the pros and cons of their participation with trusted advisors.
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.
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).
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.
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.
© 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 to a mailing list and/or members of a forum for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer.