Coordination of Rare Diseases at Sanford (CoRDS) - Myhre Syndrome Patient Registry

Based at Sanford Research, a nonprofit research institution, CoRDS is a centralized international patient registry for all rare diseases. They coordinate the advancement of research into more than 10,000 rare diseases. Here’s how:

• They work with patient advocacy groups, individuals and researchers.

• They capture health information from individuals with a rare diagnosis, undiagnosed patients, unaffected carriers or at-risk patients.

• They connect researchers and patients and notify participants of emerging clinical trials.

• They make the registry accessible. Participants can enroll for free and researchers can access it for free.

To date, 115 participants have filled out the Myhre syndrome questionnaire, providing a medical history for themselves or on behalf of someone with Myhre syndrome.

The data include basic demographics, as well as information on pulmonary, cardiovascular, hearing, and skeletal features, medications, carer burden, and lots more!

If you are a researcher interested in accessing de-identifiable data in the CoRDS Registry or looking to have CoRDS contact participants on your behalf for a clinical trial or study, please download and complete the CoRDS Researcher Access Request Form and return it to cords@sanfordhealth.org or call 877-658-9192 for more information.