The CRID™

Written By Heather Margrill

thecrid.org

IMPORTANT: Before joining ANY research study, we highly recommend creating your Clinical Research ID.

  • The CRID is crucial to using the research data collected across platforms and research programs.

  • Once you create a CRID, share it with each clinical research study that you enroll in.

  • Example for CRID registration:

    • Disease Name: ReNU Syndrome

    • Gene: RNU4-2

    • Variant: n.64_65insT (or your variant)

  • https://thecrid.org/requestaccount.php

    To create a CRID identifier, visit the website https://TheCRID.org. If you do not already have an account, click on [Create an Account]. If you have an account, click on [Login]. To create a new CRID identifier for yourself or a family member, click on the [Add a New Person] button. There is also a short training video available on the website that demonstrates this process.

  • What is CRID?

    CRID, or Clinical Research Identifier, is a unique identifier for patients participating in clinical research studies. This identifier is generated by the patient or their parent and serves as a secure and consistent way to identify a patient's information across multiple research studies.

  • Patient families may be unaware that their data is not shared with other researchers working on the same or similar diseases. You may also experience "survey fatigue" from being asked to complete similar forms for multiple studies.

    CRID allows for the sharing, reuse, and merging of data across studies by connecting deidentified patient information.

    Benefits of a CRID

    • A patient-generated research identifier that families control and choose when to share.

    • Helps protect privacy by linking research data without using personally identifiable or protected health information.

    • Reduces the likelihood of one person receiving multiple research IDs.

    • Helps families track the studies in which they participate.

    • May reduce survey fatigue by allowing previously collected information to be identified and reused.

    • Makes it easier for researchers to securely combine, share and compare data across studies.

  • The CRID is international.

    It provides a universal, patient-generated identification system used globally to connect patient records safely across different international research studies.

  • CRID is always free for the parent/patient.

  • If you have any questions or concerns about CRID, or if you need assistance, you can send an email to info@thecrid.org.

  • Is CRID Secure?

    Yes, CRID takes security seriously. All CRID data is stored on secure Amazon AWS servers and is encrypted both in the database and while in transit. Additionally, we do not use Google Analytics.

    CRID Principles

    • CRID is always free for the parent/patient

    • CRID is always optional for research studies

    • CRID data is private and will never be sold or shared with any third parties

    What does a CRID look like?

    A CRID identifier is an 8-character random string of letters and numbers that is unique to each patient.

    How to use the CRID?

    Patients can share their CRID identifier with investigators on research studies they are or have been enrolled in.

Heather Margrill
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