Patient Registry
Help us bring patients, families and researchers together to gain a better understanding of DHDDS and nus1 mutations.
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.
Results and findings are always shared with the community.
The participant owns his/her personal data and can withdraw the data from the registry at any time.
How to use the Registry
Watch the videos below for further instructions on how to use the registry