Learn more about this rare disease, how it affects our families, and how we're helping to find treatment.
RedCap
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FAQs About RedCap Registry
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How Do I Sign-up and Participate?
If you would like to enroll and complete the CoRDS Patient Registry Questionnaire online, you may do so by following these instructions. 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.
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Set up a CoRDS profile
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Activation Form – Complete the CoRDS activation form. Please use a desktop/laptop computer or tablet.
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Login Setup – The system will generate a username for you based on your name. You will need to create a password and setup a security question. Once completed, click the LOGIN button to login to your CoRDS Patient Registry Profile.