Clinical Research ID (CRID)

What is a CRID and why are we asking our TSA community to get one?

A Clinical Research ID (CRID) is a free, unique 8-character identifier (a random mix of letters and numbers) that participants generate themselves through an independent, secure platform at https://thecrid.org. It’s designed specifically to support rare disease research by giving each individual a single, consistent ID that can be used across any number of research studies, registries, and natural history projects they choose to take part in. The CRID has ethical approval for use in rare-disease research.

Why CRID matters

Rare disease research is too often fragmented, with each study, registry, and project collecting its own data in isolation and unable to share or compare it with others. A CRID changes that – by giving each participant a single, consistent ID they can use everywhere, separate research efforts can be safely linked together rather than sitting apart. Because you create and own the ID yourself, no personal information needs to be shared to make those links. Setting our CACNA1C registry members up with a CRID means our data can be connected with CACNA1C research worldwide – bringing the field together and accelerating discovery, while protecting privacy.

How to get a CRID

The process is quick, free, and entirely patient-controlled:

1. Go to https://thecrid.org and click Create an Account.
2. Enter your email address and click the verification link sent to your inbox.
3. Once logged in, click Add a New Person to generate a CRID for yourself or a family member.
4. Fill in the required details and click Save – your unique 8-character CRID will be created instantly.
5. Share your CRID with any research study you’d like to link your data across (including here, on our CACNA1C registry).

More information

Watch a short training video or reach out to amy@timothysyndrome.org for any questions.