Helping Rare Disease Research with CRIDs

The ability to connect participant data across multiple sources is crucial for working together on rare diseases. CRIDs (Clinical Research IDs) are a tool to make this connection. They give individuals in research a unique universal ID, making it simpler for doctors, scientists, and patients to centrally share and access information to collaborate effectively as a team. 

Creating a CRID for yourself or a family member is simple. Just follow these steps:

  • Go to and freely make a unique identifier using 8 letters or numbers (but not 1, 0, I, O, or L).
  • Once you’re registered, you can share your CRID with medical providers or research studies like Simons Searchlight (learn more below).

If you’re part of Simons Searchlight, adding your optional CRID is easy too. Just follow these steps:

  • Log into your Simons Searchlight account at
  • Choose which family member’s CRID you want to add.
  • Click on the “Account Settings” tab on the left side of the page.
  • Scroll down to “Other Settings” and type your CRID in the CRID field. Then click save.

To help spread awareness, please download the graphic and PDF.

How to share your CRID with Simons Searchlight

Thank you for sharing your CRID with Simons Searchlight. CRIDs are making a big impact on how we study rare diseases by bringing us together, making information more centrally accessible, and empowering patients.

Please email our Study Coordinators with any questions at

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