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More data sharing, less data silos!
The 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.
Click HERE to request your account. If you already have an account, click LOGIN to access the system.
• 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.
Does 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 www.clirinx.com.
• 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...
• 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.
The 'CRID Clinical Research ID' for unique patient IDs in rare disease research is IRB approved!
Contact us at crid@clirinx.com for details on how to include 'CRID - Clinical Research ID' in your research study/registry IRB submission documents.
• 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.
Nesbitt G, Murphy P. CRID - A unique, universal, patient-generated identifier to facilitate collaborative rare disease clinical research. Informatics in Medicine Unlocked. https://doi.org/10.1016/j.imu.2022.100973 (2022)
If you'd like your organization to be listed here to show your support for 'The CRID' initiative, please contact us.
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