Director, Registry Operations & Governance (Remote)

Cure HHT; Washington (District of Columbia); On-site; USD 90,000 - 118,000; Full time

Benefits offered by this job

Remote work

Medical, dental, vision benefits

Generous PTO and professional develop.

Job summary

Cure HHT seeks a Director, Registry Operations to lead CHORUS and HHT Connect registries, overseeing governance, IRB workflows, vendor management, and data access/sharing end-to-end. This role requires an experienced project manager with rare disease registry or multi-site clinical trial background.

The candidate will supervise a small registry team, partner with the Data Scientist/Registry Analytics Lead, and ensure the data asset is well-governed, research-ready, and shareable for academic

Qualifications

• Bachelor's degree or higher in health or related field.
• Demonstrated project management experience in multi-site research or similar programs.
• Experience interfacing with academic centers, investigators, and sites.
• Knowledge of IRB processes, data use agreements, and governance/compliance.

Responsibilities

• Own registry operations, governance, and multi-year roadmap execution.
• Manage IRB submissions, data access frameworks, and confidentiality safeguards.
• Coordinate with Studytrax vendor and data analytics leads; ensure QA of exports and reports.
• Lead recruitment, enrollment, and retention efforts across sites and partners.

Skills

Project management

Regulatory knowledge

Interfacing with investigators

Data governance

Education

Bachelor's degree or higher in health or related field

Tools

Studytrax

Job description

Cure HHT seeks a Director, Registry Operations to lead CHORUS and HHT Connect registries, overseeing governance, IRB workflows, vendor management, and data access/sharing end-to-end. This role requires an experienced project manager with rare disease registry or multi-site clinical trial background.

The candidate will supervise a small registry team, partner with the Data Scientist/Registry Analytics Lead, and ensure the data asset is well-governed, research-ready, and shareable for academic