Coordination of Rare Diseases at Sanford (CoRDS)

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:

1. Complete your screening form and receive login information.
2. Review informed consent and complete questionnaire to become fully enrolled. You will be asked to update this information annually.
3. 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.

Update Now

Connect with CoRDS on Social Media

We enjoy connecting with the individuals and communities we serve. We’re on Facebook and Twitter, where you can get the latest news on rare disease research and connect with registry users worldwide.

Find us on social media:

• Twitter: @SanfordCoRDS
• Facebook: Sanford CoRDS

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 05/01/2019

• 6,622 Fully enrolled* participants
• 227 Eligible** Participants
• 6,849 Total
• 1,018 Rare Diseases***
• 50 US States + DC
• 64 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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