CLIRINX

CLIRINX is an IT company focused on supporting epilepsy and rare disease research. It develops web-based software tools for electronic data collection, study management, and participant engagement, serving researchers, patient advocacy groups, and institutions involved in patient registries, natural history studies, and clinical trial readiness assessments.

All CLIRINX tools are designed to be 21CFR11-compliant and internet-based, with a stated commitment to team science and disease advocacy. The company guides research teams through IT components from study design through study close-out, and explicitly states that it does not analyze, share, or sell any data collected through its platform — customers retain ownership of their data.

Core Products and Modules

• Electronic Data Collection (EDC): Web-based electronic data capture for clinical and research studies.
• Patient Portal / Data Sharing: A participant-facing portal enabling data sharing between patients and research teams.
• Medical Imaging Adjudication: Workflows supporting the review and adjudication of medical imaging data.
• cxText – Translation Engine: A translation tool to support multilingual research data collection.
• CRID – Clinical Research ID: A system for generating and managing unique clinical research identifiers; the CRID system has issued nearly 6,000 identifiers as of late 2024.
• Data Visualization: Tools for converting research data into visual insights.
• Data Sharing: Functionality to unlock and share collected research data across teams or stakeholders.
• VarTracker – Genetic Variant Tracker: A module for tracking genetic variants relevant to rare disease research.
• Big Data: Infrastructure and tools capable of handling terabytes to petabytes of research data.
• External Database APIs: Integrations with health informatics databases to extend data access and interoperability.

Research Areas and Use Cases

• Patient registries for rare diseases, including a patient-led registry for Primary Biliary Cholangitis (PBC) launched in July 2025.
• Natural history studies for epilepsy and other rare conditions.
• Clinical trial readiness assessments.
• Genetic epilepsy studies, including a study launched with the University of Melbourne in 2025.
• The Rare Disease Data Repository (RDDR), available at theRDDR.org, went live in July 2024.
• CLIRINX and its CRID system were featured in a major SCN2A-related scientific publication in April 2024.

Security, Compliance, and Data Privacy

• SSL encryption and encryption of data at rest.
• Unique usernames and passwords, single sign-on via Okta, and two-factor authentication.
• Role-based access controls and digital signatures.
• Full audit log and data change history.
• Version-controlled case report forms (CRFs) and study documents.
• Restricted and encrypted protected health information (PHI) fields.
• Multi-blockchain document timestamps.
• IP and geolocation restrictions, OS-level security, and servers accessible only behind a firewall or SSH with private key encryption.
• Cyber and professional indemnity insurance coverage.
• Features are designed to support HIPAA and 21CFR11 compliance efforts.

CLIRINX has established partnerships with academic institutions including the University of Melbourne and serves customers across the rare disease research community. The company continues to expand its platform with new registries and research systems.