Registry gives rare-disease foundations and clinical research teams a secure, living database — turning scattered medical records into queryable cohorts that accelerate therapy development.
site activation vs. paper-based registries
Foundation directors and PIs spend years waiting for site activation. Registry's pre-built eCRF templates, automated IRB documentation packages, and guided site onboarding compress the operational timeline so your team starts collecting data — not chasing paperwork.
enrolled across 38 countries in active registries
Medical affairs leads and principal investigators need real-world evidence that withstands regulatory scrutiny. Registry's cohort builder lets you filter by diagnosis date, biomarker trajectory, treatment history, and patient-reported outcomes — exporting audit-ready datasets formatted for FDA submissions, EMA dossiers, and journal publications.
"I can see my own data, contribute updates between visits, and know my story is part of something larger."
data completeness rate across active registries
Registry's patient portal gives participants access to their own records — diagnosis timeline, biomarker values, treatment responses. When patients understand their contribution to the research, enrollment conversations change. Retention rates climb. Data completeness reaches levels no paper system has achieved.
From foundation directors managing 200-patient rare disease registries to pharma medical affairs teams preparing FDA submissions.
"Registry cut our site activation time from 18 months to under 9. We enrolled 400 patients in our first year — twice what we projected."
We'll walk through a registry configured to your disease area, show you the cohort builder and data completeness dashboard, and answer your protocol-specific questions.
Registry design templates, IRB checklist, eCRF examples, and a site activation playbook — free, no commitment.