Director of Registry Operations

Job Summary

Leading the CHORUS and HHT Connect registries, the full-time salaried Director of Registry Operations will manage registry governance, oversee compliance workflows, and coordinate data access while establishing in-house capabilities and driving participant recruitment and retention.

Key Responsibilities

• Own and direct registry operations, providing strategic vision and executing against a multi-year roadmap
• Manage IRB communications and ensure compliance with applicable regulations while maintaining audit-ready documentation
• Serve as the primary contact for data access requests and manage data use agreements in collaboration with legal and research leadership

Required Qualifications

• Bachelor's or higher degree in a health or social science or related field, or equivalent experience, with 3-5+ years in research study management
• Demonstrated project management experience in research, regulatory, or grant-funded programs, preferably with multi-site clinical trials
• Hands-on experience with patient registries, especially in rare disease settings, including registry operations
• Direct experience interfacing with academic centers and managing recruitment/enrollment efforts
• Familiarity with IRB processes, data use agreements, and research governance and compliance