Patient Registry

Help us bring patients, families and researchers together to gain a better understanding of DHDDS and nus1 mutations.

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DHDDS & Nus1 Global Patient Registry

Coordination of Rare Diseases at Sanford (CoRDS) is a disease agnostic platform with data for 3,162 rare diseases, 118 partner groups, 20,526 participants, 50 states and 105 countries represented - as of August 2024.

Participants respond to a DHDDS and Nus1 mutations survey.

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Results and findings are always shared with the community.

Join the Patient Registry

Please click below to enrol...

ENROL HERE
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The participant owns his/her personal data and can withdraw the data from the registry at any time.

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Click here for answers to Frequently asked questions...

FAQ's

How to use the Registry

Watch the videos below for further instructions on how to use the registry