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.
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.
- The registry is protected by the Health Insurance Portability and Accountability Act (HIPAA) and compliant with the European Union General Data Protection Regulation (GDPR). Registry participants own their personal data.
- Registry participants can withdraw the data from the registry at any time.
- There is no cost to registry participants.
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 cords@sanfordhealth.org and requesting a paper version of the CoRDS Patient Registry Questionnaire.
Step One
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
- Complete CoRDS Standard and Disease-specific Questionnaire in the Patient Registry Profile
- Click the CONTINUE ENROLLMENT button near the top of the screen
- Click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed to the next set of questions
⚠️ 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
- Please click SUBMIT after you have answered all of the questions in the questionnaire.
- You can login at any time to update your answers.
- Please update your questionnaire at least annually and after any significant changes to your health.
