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CRID Example

More data sharing, less data silos!
gerryThe Clinical Research ID (CRID) is a revolutionary service that empowers patients to take control of their own research data. CRID is a service that enables patients involved in clinical research the opportunity to create their own Unique Universal ID. You create your CRID (for yourself and/or your child) and you decide which researchers to share it with. By sharing your CRID, researchers can then reuse, merge and share your research data (without using your PII/PHI). It's a free service and we'll never sell or share your information with anyone. Join the future of rare disease research today and get your own CRID.
~ Gerry Nesbitt, Founder & CEO.

Parents & Patients

Click HERE to request your account. If you already have an account, click LOGIN to access the system.

CRID Principles

• CRID is always free for the parent/patient.
• CRID is always optional in a research study.
• CRID data is always private and will never be sold or shared.

Need IT for a Patient Registry, Natural History Study, Clinical Trial Readiness?

CLIRINX logoDoes your organization need help with setting up a patient registry, natural history study or clinical trial readiness study? CLIRINX is your trusted partner for IT web-based solutions tailored to the unique demands of Patient Registries, Natural History and Clinical Trial Readiness research studies. Our IT platform includes study management, electronic data collection, and a participant portal, among many other advanced IT solutions. We are dedicated to supporting internet-based research, team science, and disease advocacy groups. Visit us at

Training Video

Benefits for Patients


• The CRID is a patient-generated identifier specifically for use in clinical research. The parent/patient decides who to share it with.
• Patients and parents no longer need to handover sensitive PII/PHI to research studies.
• There's a significantly less chance of a person having multiple IDs because the patient generates and shares their own CRID.
• The CRID identifier addresses privacy issues because no PHI is shared and it's the patient that decides to share their CRID identifier.
• Parents and patients can gain visibility into the research studies they're enrolled in.
• The CRID identifier can reduce 'survey fatigue' because previously provided information can be identified and reused.
• It's significantly easier for different research studies to merge, share and compare patients' clinical data.



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..

Benefits for Researchers


• Reuse, merge and share de-identified research datasets with other IRB-approved research studies.
• Reuse data previously provided by parents/patients.
• CRID identifiers can be added to research studies retrospectively.

CRID is IRB Approved!

IRB Approved

The 'CRID Clinical Research ID' for unique patient IDs in rare disease research is IRB approved! Contact us at for details on how to include 'CRID - Clinical Research ID' in your research study/registry IRB submission documents.

Benefits for the Research Community


• Eliminate data silos.
• Enhance that value of the current datasets.
• Reduce inefficiencies in data collection.
• Patient-orientated systems can be built by 3rd parties that enable greater collaboration and data sharing and reuse of patients' data.
• Reuse, merge and share de-identified research datasets with other IRB-approved research studies.

  CRID Publication

CRID paper

Nesbitt G, Murphy P. CRID - A unique, universal, patient-generated identifier to facilitate collaborative rare disease clinical research. Informatics in Medicine Unlocked. (2022)

Organizations Using CRID


If you'd like your organization to be listed here to show your support for 'The CRID' initiative, please contact us.

Glut1 Deficiency Foundation
CACNA1A Foundation
KCNT1 Epilepsy Foundation
Combined Brain
Schinzel-Giedion Syndrome (SGS)
Koolen-de Vries Syndrome (KDVS)
Simons Searchlight
STXBP1 Foundation
Boston Children
Cure KCNH1
The HNRNP Family Foundation
BC Children
The Yellow Brick Road Project
ARRE Foundation
CTNNB1 Connect and Cure
MEDL13L Foundation
PSC Partners (Canada)
FOXG1 Research Foundation
SLC6A1 Connect
Scarletts Village (GABRA1)
Global Registry for Inherited Neuropathies (GRIN)

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