announcement

Read about Simons Searchlight’s commitment to data privacy and security.

DATA

Add Your CRID to Your Simons Searchlight Account

“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 made when researchers can connect data from different studies. That’s where a Clinical Research ID (CRID) comes in.

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

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

How to create your CRID:

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

To add your CRID to Simons Searchlight:

  1. Go to your Simons Searchlight account
  2. Click Account Settings
  3. Enter your CRID

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 Coordinator@SimonsSearchlight.org.

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

Stay connected with Simons Searchlight

Join our newsletter to receive updates