Welcome to the Coordination of Rare Diseases at Sanford (CoRDS)!

Based at Sanford Research, a not-for-profit research institution, CoRDS is a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and for researchers to access. We work with patient advocacy groups, individuals, and researchers to coordinate the advancement of research into the 7,000 rare diseases.

 

 

Our Solution

How does enrollment in the CoRDS Registry work?

  1. Complete your screening form so CoRDS personnel can either send you your login information for our secure web portal or mail you the enrollment forms.
  2. Complete your informed consent and questionnaire to be fully enrolled in the CoRDS Registry. You will be asked to update this information annually.
  3. Wait to be contacted by CoRDS personnel on behalf of researchers who would like for you to participate in their study!
  • Join CoRDS. Help accelerate research.

    Any individual with a rare, uncommon, or unknown disorder is invited to join the CoRDS Registry and help accelerate research into rare conditions. Enrolling is simple, and starts with the CoRDS Screening Form.

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  • Participants receive login credentials

    Once a participant has filled out the CoRDS Registry Form, they receive login credentials for the secure online platform. The online platform will prompt the participant to complete the informed consent and questionnaire.

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  • Participants update information annually

    CoRDS Personnel contact participants annually to update their information or about a research opportunity for which they are eligible.

  • Researchers apply for access.

    Researchers with IRB approval may apply to access the CoRDS Registry. Participants will be contacted by CoRDS staff on behalf of any researchers who wish to include them in a research study or clinical trial.

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  • Patient Groups partner with CoRDS

    Patient advocacy groups (PAGs) representing rare diseases can partner with CoRDS to create a patient registry.

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