Powered by Aretetic's DigitalCabinet platform, our registry system at Genetic Alliance is a modern, secure, and participant-centered research infrastructure tailored for patient
advocacy organizations. Communities can build branded registries, collect rich data, and drive meaningful research with ease.
Drawing on nearly three decades of experience, this system reflects our long-standing commitment to transparency, trust, and innovation. Now managed fully in-house through our partnership
with Aretetic, DigitalCabinet includes powerful tools for engagement, flexible data collection, and real-time insights—all aligned with your community's needs.
Participants maintain full ownership and lifetime control of their data. They can view, update, or withdraw their information at any time. This consent-driven, sovereignty-first approach
ensures data is collected ethically and used transparently.
The platform is fully adaptable—from simple intake forms to longitudinal registries—and every implementation is co-designed with advocacy leaders to reflect the voice, language, and
priorities of the people it serves.
Fully GDPR and HIPAA compliant, DigitalCabinet ensures privacy and ethical data handling at every step, while allowing data to support multiple research efforts over time.
Get in touch to start building your registry today → (https://digitalcabinet.org/contact)
Get started quickly…
DigitalCabinet gives you the tools to stand up a registry in days—not months.
- Launch branded registry portals for your community
- Onboard participants with easy-to-use, secure signup workflows
- Use validated instruments from our survey library or design your own
- Upload and store genomic and rare data formats securely
...While recognizing that people are central.
Our platform puts individual data ownership front and center.
- Participants own and control their data
- Privacy-first design meets the highest global standards
- Real-time dashboards and analytics for participants and admins
- Mobile- and desktop-friendly design for easy access
- Multilingual support to include global communities
- Governance structures built in partnership with your organization
And because we know running a registry or study can be challenging...
Aretetic brings decades of real-world experience supporting hundreds of studies.
- Templates and best practices for stakeholder engagement
- Streamlined IRB support through Genetic Alliance IRB
- On-demand consultants for community building and data strategy
- Step-by-step training to help you manage and grow your registry
