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Researcher Access to Study Data

Dear CoRDS Partners,

We hope you all are doing well and your new year is off to a great start. As you have noticed, CoRDS has been working on new features for participants, partners, and now researchers. We are excited to announce the launch of our new researcher access portal. This portal will be used for researchers to submit requests for data or to have CoRDS contact participants on their behalf. Researchers will be able to obtain the de-identified data in real time through the portal as opposed to having to wait for CoRDS to send the data in a secure file. Approved researchers will continue to have access to the de-identified data for 1 year.

The portal also allows community members with an interest in rare diseases to make very basic queries of the registry. For instance, an individual could search to see to see if a rare disease is represented in the database, and how many people with that condition are enrolled. Community members will NOT have access to the de-identified data.

If you have any questions or if you would like a demo of the researcher portal, please email Alyssa at [](

Thank you for being a loyal CoRDS partner!

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