Our Partners
The Coordination of Rare Diseases At Sanford (CoRDS) is a registry based at Sanford Research in Sioux Falls, South Dakota. CoRDS collects information on patients diagnosed with a rare disease to help accelerate research into rare diseases. It was developed because access to information about rare diseases presents a challenge to researchers, patients and their families. CoRDS provides a way for researchers conducting clinical trials to search for individuals who would be able to participate in their clinical trial, and keeps individuals aware of the opportunities to participate in clinical trials.
If you or a family member have been diagnosed with a rare disease, you are invited to submit information to the registry.
Enrollment Steps
- Complete the online enrollment form.
- CoRDS personnel contacts participant and conducts a brief interview to gather information to send the CoRDS consent form and CoRDS questionnaire.
- CoRDS participants will read and sign the consent form, complete the 8 item questionnaire, and send the forms back to CoRDS personnel.
- When CoRDS personnel receive the information, they will enter the information in the CoRDS database.
- CoRDS personnel will contact the participant annually to update the participant’s information and additionally if a researcher would like to contact them regarding a research study.
Have Specific Questions about Enrollment? Please Contact:
Lauren Beaumont [email]
Coordination of Rare Diseases at Sanford
Sanford Research
2301 E 60th Street North
Sioux Falls, SD 57104
Phone: 605.312.6423
Click here for the Research Brochure.
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