Coordination of Rare Diseases at Sanford (CoRDS)

Based at Sanford Research, a nonprofit research institution, CoRDS is a centralized international patient registry for all rare diseases.

We coordinate the advancement of research into 7,000 rare diseases. Here’s how:

We work with patient advocacy groups, individuals and researchers.
We capture health information from individuals with a rare diagnosis, undiagnosed patients, unaffected carriers or at-risk patients.
We connect researchers and patients and notify our participants of emerging clinical trials.
We make the registry accessible. Participants can enroll for free and researchers can access it for free.

How to Apply

If you’re a researcher with IRB approval and are interested in accessing the CoRDS Registry, complete the CoRDS Researcher Access Request Form and return it by email.

Download Access Form

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How to Enroll in CoRDS

By choosing to participate in CoRDS, you share important pieces of your health story with researchers and clinicians around the globe. In turn, we will alert you of research relevant to you.

What to expect:

Complete your screening form and receive login information.
Review informed consent and complete questionnaire to become fully enrolled. You will be asked to update this information annually.
Anticipate being contacted for potential research and clinical trial opportunities.

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Update Your Profile

The information you contribute to the CoRDS registry is intended to be updated over time so that researchers can piece together a clear picture of how a disease progresses. Are you experiencing new symptoms? Have you started a new medication? Make sure we know about any changes. When your profile is up to date, we can send you information that best matches your condition.

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Enrollment Numbers & Metrics

We’re growing. See how CoRDS has made an impact on the world of rare diseases with updates on our progress.

Enrollment Numbers
Metrics as of 09/01/2019

7,111 Fully enrolled* participants
165 Eligible** Participants
7,276 Total
1,077 Rare Diseases***
50 US States + DC
65 Countries***

*Informed Consent and Questionnaire Permission & Data-Sharing questions completed
**Informed Consent and Questionnaire pending completion
***From Enrolled participants

Listen to CoRDS Cast

Hear from the rare disease community with our monthly podcast, CoRDS Cast. In each episode, you will hear from researchers and advocates for rare disease patients. We highlight the groups we work with to create disease-specific questionnaires and showcase the exciting research going on for rare diseases around the world. Listen here or subscribe with your favorite podcast app.

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Coordination of Rare Diseases at Sanford (CoRDS)