Cockayne Syndrome
Global Patient Registry

Join us in our mission to bring patients, families, and researchers together to achieve a better understanding of and treatment for Cockayne Syndrome.

If you or a family member has been diagnosed with Cockayne Syndrome, please fill out the patient registry to help us collect data and have a significant impact on Cockayne Syndrome research.  

Riaan Research Initiative is partnering with Sanford CoRDS to create the registry. Sanford CoRDS supports and enables rare disease communities to build robust registries, providing researchers with the information they need to drive research forward.  For more information please read IRB-approved Frequently Asked Questions

Registry Highlights

Providing your consent to Riaan Research Initiative to have access to the data you provide will allow us to better understand Cockayne Syndrome, to learn where to focus our research initiatives, and to understand how best to support Cockayne Syndrome patients.

Each registry participant will be assigned a Global Unique Identifier that enables de-identification of the data when shared with approved researchers to protect the patient’s privacy. This means that your name and other identifying information will remain private. The de-identified data will be shared only with researchers approved by Sanford’s Scientific Advisory Board (SAB) together with Riaan Research Initiative.

Enrollment Instructions

If you would like to enroll and complete the CoRDS Patient Registry Questionnaire online, you may do so by following the instructions below. The registry works best with updated versions of Google Chrome, Mozilla Firefox or Microsoft Edge and may not work as well with a phone or tablet. You may also complete registration on paper by calling CoRDS at + 1 877 658 9192 or sending an email to and requesting a paper version of the CoRDS Patient Registry Questionnaire.

Login Setup

The system will generate a username for you based on your name. You will need to create a password and set up a security question. Once completed, click the LOGIN button to log in to your CoRDS Patient Registry Profile.

Step Two

⚠️ If you have more than one family member with Cockayne Syndrome – please enroll each participant separately. Your family’s participant accounts can later be linked by clicking “Family Branching” in the participant portal.

Step Three

Thank you for registering and for helping us to achieve our mission!