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.
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..
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.
To avoid confusion, it does not use the numbers 1 or 0, or the letters I, O or L.
This allows for 852,891,037,441 unique identifiers.
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).
You can validate a CRID identifier (i.e. check that it exists!) by clicking HERE (entails a $$ fee for service).
CRID provides an API for use by authorized research organizations (entails a $$ 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 identifierYou 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.
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