Why You Should Get a CRID - Clinical Research ID?
November 13, 2025
As the APBD Research Foundation and our research community embark on new and continued research studies to find cures for and advance our understanding of APBD, we strongly encourage our patient community to create a Clinical Research ID (CRID).
The Foundation is committed to advancing research and leveraging innovative tools that empower patients and researchers. We’re asking all who have an APBD or early-onset GSD IV diagnosis to obtain a CRID; then share the CRID number with your researchers and the Foundation.
The CRID system represents a significant advancement in rare disease research, empowering patients, families, and researchers to collaborate more effectively while maintaining the highest standards of privacy and security. By adopting CRID, the APBD Research Foundation and its supporters can help accelerate discoveries and improve outcomes for those affected by rare diseases.
What is a CRID?
The CRID system is an Institutional Review Board (IRB)-approved service designed to streamline data sharing and collaboration while safeguarding patient privacy. It allows individuals to create their own secure, de-identified research ID that can be shared with researchers across multiple studies, registries, and clinical trials,
A person’s CRID is a unique 8-digit code that only needs to be created once and it is completely free. This system enables data to be reused, merged, or shared between researchers without ever exposing private health details - protecting patient confidentiality.
Grace Vigianno, at COMBINEDBrain, recently joined our APBD Patient Chat to discuss the importance of using the CRID. Watch the video here…
How is a CRID Used?
Your CRID can be used in a variety of research contexts, including:
Patient registries
Natural history studies
Clinical trials
Biorepositories
By providing a consistent identifier, CRIDs facilitate the connection of patient data across different research projects, streamlining the sharing of information and enabling a more comprehensive understanding of rare diseases.
Why Do We Need to Use a CRID?
For Patients:
Empowers individuals to control their own research data and decide which studies or researchers can access it.
Reduces “survey fatigue” by allowing the reuse of previously submitted data and minimizing repetitive form-filling across studies.
Ensures privacy by never sharing or selling personal data because CRID data is encrypted and securely stored.
For Supporters:
Offers peace of mind knowing that participation in research is always optional and privacy is strictly maintained.
Provides a simple, free way to contribute to the advancement of rare disease research.
For Researchers:
Enables the merging and reuse of deidentified patient data across studies, increasing the statistical power and scope of research.
Facilitates collaboration by providing a universal identifier that can be used globally, regardless of language or location.
Helps overcome barriers created by fragmented or separate data systems.
CRID identifiers can be added retrospectively to research studies.
For the Research Community:
Promotes open science and data sharing while maintaining the highest standards of data security and patient autonomy.
Supports the creation of larger, more diverse datasets, leading to deeper insights into disease mechanisms and potential therapies.
Privacy and Security
As stated above, CRID is always free for patients and parents, and participation is strictly voluntary for all research studies. All data is encrypted both in transit and at rest, stored securely, and never sold or shared with third parties. The system has been reviewed and approved by an IRB, ensuring compliance with ethical standards for patient protection.
How to Create a CRID Account (estimated time about 5 minutes)
Visit the CRID website at https://thecrid.org/index.php
Select “Create an Account.”
Enter your email address.
Check your inbox and click the verification link sent to you.
Fill in your information and select “Save.”
To create a CRID for yourself or a child, select the green plus (“add a new person”), fill in the required details, and click “Save.”
Your unique CRID is now ready to use and share with research teams as you choose.
Have Questions?
As we move forward with this initiative, if you have any questions about the CRID or need support in any way through the process of creating a CRID, please feel free to reach out to our intern Henry Daumeyer at hd2579@cumc.columbia.edu or 513.680.1319.
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