DATA

Connect Your Research Data with a CRID

“The CRID has significantly helped streamline CTNNB1 patient data, making it possible to detect patterns, validate findings, and accelerate the development of treatments that might otherwise take decades to achieve. For example, just last month, researchers from 4 different institutions were able to share data gathered in-person at our conference. That is huge! Most importantly, our patients’ privacy is protected and the data sharing is controlled by the families.”

Emily Amerson, President, CTNNB1 Connect and Cure

In rare disease research, every piece of information matters. Meaningful advances are often made when researchers can bring together data and knowledge from different studies. That’s where a Clinical Research ID (CRID) can help.

The CRID was developed by rare disease researchers as a shared tool that research programs can use to link de-identified participant information across studies. Simons Searchlight did not create the CRID—we adopted it to help make families’ contributions more useful across the broader research ecosystem while protecting participant privacy and reducing research burden.

A CRID is a unique eight-character code that can be used across participating studies, including Simons Searchlight, without using your name or other identifying information. If you participate in more than one study, using the same CRID allows research teams to recognize that de-identified information belongs to the same participant. This can help researchers link data across studies, avoid duplication, and reduce the need for families to provide the same information multiple times.

You can learn more about the development of the CRID in this research article from the researchers who originated the CRID.

Creating your CRID only takes a few minutes. Follow the steps or watch the video below.

How to create your CRID:

Go to TheCRID.org
Create an 8-character ID (letters or numbers)
Share it with your research teams and Simons Searchlight (see steps below)

To add your CRID to Simons Searchlight:

Go to your Simons Searchlight account
Click Account Settings
Enter your CRID

Thank you for sharing your CRID with Simons Searchlight. By using a shared identifier across research programs, families can help researchers make better use of information collected across studies and strengthen collaboration across the rare disease research ecosystem—helping every contribution go further.

Please email our Study Coordinators with any questions at Coordinator@SimonsSearchlight.org.

By clicking to watch this video, you agree to our privacy policy.

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

Connect Your Research Data with a CRID

In rare disease research, every piece of information matters. Meaningful advances are often made when researchers can bring together data and knowledge from different studies. That’s where a Clinical Research ID (CRID) can help.

How to create your CRID:

To add your CRID to Simons Searchlight:

Stay connected with Simons Searchlight