Patient Registry Software Development
Patient Registry Software Built for Longitudinal Research at Scale
We design and build custom patient registries for rare-disease foundations and research institutions — from participant enrollment to longitudinal tracking to pharma-ready analytics, all HIPAA-compliant from day one.
Why Research Foundations and Institutions Choose Us
Built and operate the technology behind one of the world's largest longitudinal patient registries, spanning 900+ participants across 8 active studies.
HIPAA, GDPR, and 21 CFR Part 11-aligned data handling with built-in PHI controls and full audit trails.
Registries built to track participants over years, not just a single study — with clean, structured data from day one.
Aggregated, de-identified dashboards for pharma and academic partners without exposing individual patient data.
Launch a working registry fast, then extend it as your research program grows.
From initial registry design to ongoing maintenance, new studies, and evolving compliance needs.
Client Success Stories in Patient Registry Development
World's Largest ALS Patient Registry
Built the registry and data infrastructure behind the world's largest longitudinal ALS patient dataset. ✅ 900+ participants tracked across 8 active studies ✅ Unlocked pharma and academic research partnerships

Formly – Oncology Disease Registry
Built a mobile-responsive disease registry for oncologists at leading hospitals. ✅ Replaced fragmented Excel-based tracking with structured, auto-filled data capture ✅ Significant increase in structured data collection

Tailored Solutions for Patient Registry Software

Custom Patient Registries
Purpose-built registries for rare diseases, oncology, or any longitudinal research program.

Participant Enrollment & Onboarding
Web and mobile enrollment flows, consent capture, and eligibility screening built for your protocol.

Longitudinal Data Capture
Structured, validated data entry with auto-fill, skip logic, and field-level checks that reduce cleaning downstream.

De-Identified Consortia Dashboards
Aggregated analytics for pharma, academic, and institutional partners — without exposing individual identities.

EHR & EDC Integrations
Connect your registry to existing EHRs, EDC systems, or clinical databases via HL7/FHIR.

Registry-to-Trial Pipeline
Turn registry participants into a ready pool for future clinical trials and studies.
Our Process: From Idea to Industry-Ready Platform
Let's Talk About Your Use CaseDiscovery & Protocol Mapping
Understand your research goals, participant population, and long-term tracking needs.
Registry & Data Model Design
Design the data schema, consent flows, and participant journey around your specific disease or study focus.
Agile Development
Sprint-based builds with regular check-ins, so the registry evolves with your research program.
Compliance & Validation Testing
HIPAA, IRB, and audit-trail validation before launch.
Deployment & Ongoing Support
Launch, onboard your team, and get ongoing support as new studies and partners come online.
We've built and operated the data infrastructure behind one of the largest patient registries in rare-disease research.
You own the code, data, and documentation — with transparent workflows and no lock-in.
Registries designed to outlast a single study, growing with your research program for years.
Why Choose Latent for Patient Registry Software?
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