Empowering Ethical Research & Charity Registries Through Consent
Create compliant, consent-based registries for studies, rare disease research, or community charities. GeneHub unites researchers, patients, and advocacy groups to make data sharing safe and purposeful.
Why It Matters
Data for good, not just data collection.
Patients often want to help but fear losing control of their data. Charities struggle to manage registries compliantly. Researchers waste time on fragmented consent and recruitment. GeneHub solves all of this.
How It Works
Four simple steps to get started
- 1Define your purpose
Create a study (registered or preclinical) or a charity registry — each gets compliant governance and consent options out of the box.
- 2Set up data & consent
Decide what you'll collect: GP records, genomic data, or questionnaires. Add your consent template or choose one of ours.
- 3Engage your community
Use GeneHub's secure onboarding links, magic links, or QR codes to invite participants.
- 4Discover insights
See how many participants match your criteria, visualize by condition and geography, and monitor engagement.
Built for Everyone
Two core use cases, one platform
For Researchers
Import studies from ClinicalTrials.gov or define new preclinical projects. Match participants using live cohort tools and request data with granular consent.
- Import studies from ClinicalTrials.gov
- Live cohort matching tools
- Granular consent management
- GP and genomic data access
- Transparent engagement tracking
For Charities & Foundations
Create and manage compliant registries for specific conditions. Let participants contribute their data safely and withdraw anytime.
- Compliant registry creation
- Secure data contribution
- Revocable consent
- Aggregated insights sharing
- Community engagement tools
Everything you need
Powerful tools for ethical research
GeneHub provides everything researchers and charities need to create compliant registries and conduct ethical studies.
- Consent-Driven Data Access
- Transparent, revocable consent flows ensure patients maintain control over their data at all times.
- Cohort Matching & Insights
- Real-time patient counts, condition filters, and regional maps help you find the right participants.
- Registry Management
- Create and manage compliant registries with built-in governance and consent options.
- Custom Questionnaires
- Build and deploy forms tailored to your study or registry needs.
- GP & Genomic Data Connectors
- Secure access to medical and genomic records with explicit patient consent.
- Geographic Visualization
- Visualize patient distribution and study locations on interactive maps.
GeneHub let us create a compliant patient registry in days, not months. Our participants love the transparency — they see exactly what they consent to.
Trust & Compliance
Compliance isn't optional — it's built in
Patient trust is at the heart of everything we do. Every feature is designed with compliance and security in mind.
- Patient data never shared without explicit consent
- Audit trails for every study or registry
- Secure data handling statements attached to each project
- Infrastructure ready for GDPR, NHS DSPT, and ISO 27001 alignment
Start a compliant registry or study today
Join researchers and charities who are already using GeneHub to advance medical science and support rare disease communities.