Resources

CRID Is Not PHI

If you're a rare disease organization or academic researcher using the CRID and your IRB needs support in determining whether the CRID qualifies as PHI, please contact us. We can provide our formal statement, Why the CRID Is Not PHI and Should Be Allowed in De-identified Research Datasets, to assist in your IRB review.

CRID Patient Information Sheet

This is a MS Word template of the "CRID - Patient Information Sheet". You can customize and share this with your patient community.
Click here to download the document.

Supporters

A number of parent-led disease organizations are showing their support for using CRID unique patient IDs in rare disease research. These organizations recognize the importance of having a system for identifying patients with rare diseases across research studies, which can facilitate data sharing, collaboration, and ultimately, accelerate the development of effective treatments. Click HERE to view these..

CRID Format

The CRID identifier is 8 characters long and is composed of alphanumeric characters (letters and numbers). It does not contain any spaces or any special characters.
This allows for 852,891,037,441 unique identifiers.

Data Encryption & Privacy

All personal data in the database is encrypted using the Advanced Encryption Standard (AES-128). It's also encrypted at-rest and in-transit. The sole purpose of CRID is to "promote data sharing and eliminate data silos". We will never share or sell your information. We don't use 3rd party website tracking cookies, like Google Analytics. The CRID system is installed on secure Amazon AWS servers located in Ireland (EU).

Validate a CRID

You can validate a CRID identifier (i.e. check that it exists!) by clicking HERE.

RESTful API ($$)

CRID provides an API for use by authorized research organizations (entails a $$ fee for service). This API enables researchers to interact with CRID programatically and embed CRID functionality in their applicatiions. Contact us for API code examples in Curl, PHP, JavaScript, Java and Python.

API Endpoints include:

• Verify a CRID identifier
• Get Study Information
• Get Token Information
• More to be added....

You will need to contact us in order to be granted access to the CRID API. Your research study must be approved by a recognized IRB.

Training & Webinars