Why The CRID Matters

As a patient advocacy group, we know how important it is for families to see their data drive meaningful research. That’s why we’re proud to partner with Simons Searchlight, our trusted research partner, to promote the use of the Clinical Research ID (CRID).

 

In rare disease research, every piece of information matters. The most meaningful advances happen when researchers can connect data across different studies. That’s where a CRID comes in — and it’s especially important for families with DLG4 SHINE.

 

A CRID is a simple, 8-character code unique to you. Think of it as a “research linking number” that allows your data to be connected between studies—without ever sharing your name or personal details. This helps scientists see the bigger picture while avoiding duplicate work.

 

Your privacy and security always come first. CRID data are encrypted, stored on secure servers, and your personal information will never be shared or sold. Read more about CRID’s commitment to privacy. 

 

Creating your CRID only takes a few minutes. Follow the steps or view the graphic below.

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How to Create Your CRID

1. Visit TheCRID.org

2. Create your 8-character ID (letters or numbers)

3. Share it with your doctors, research teams, and Simons Searchlight

 

Adding Your CRID to Simons Searchlight

1. Log in to your Simons Searchlight account

2. Click Account Settings

3. Enter your CRID
    

Every CRID adds another important connection in the research network. Yours could be the missing link that helps lead to the next discovery. If you have any questions related to Simons Searchlight, contact their team at Coordinator@SimonsSearchlight.org.