Director, Registry Operations

Cure HHT

4d•$90,000 - $118,000•Remote

About The Position

Cure HHT is seeking a Director, Registry Operations to lead its flagship patient registry and natural-history data platform, CHORUS, and the HHT Connect community. This director-level role is responsible for day-to-day operations, governance coordination, IRB and compliance workflows, vendor management, and the end-to-end data access and data-sharing framework. The position requires establishing durable in-house capability, taking over duties previously handled by a consultant. The ideal candidate will be an experienced project manager from a rare disease registry, research, or multi-site clinical trials background, comfortable working independently, interacting with academic centers, driving participant recruitment, and managing the registry vendor (Studytrax). This role will also involve building and overseeing a small registry team and close collaboration with other departments.

Requirements

Bachelor’s or higher degree in a health or social science or related field, or an equivalent combination of education and experience.
3–5+ years of research study or other directly relevant experience.
Demonstrated experience as a project manager running research, regulatory, and/or grant-funded programs, ideally with multi-site clinical trials, regulatory, data analytics, and operations exposure.
Hands-on experience with patient registries, including practical, full-time registry operations experience.
Direct experience interfacing with academic centers, investigators, and/or clinical sites.
Experience managing recruitment/enrollment and working directly with researchers on agreement-based data deliverables.
Experience managing a data-system vendor or platform; clinical data system experience required.
Working knowledge of IRB processes, data use agreements, and research governance and compliance.
Ability to lead without formal authority and to work independently in a remote environment.
Strong written and verbal communication, attention to detail, time management, and problem-solving skills.
Comfort building new procedures.
Basic computer proficiency and familiarity with project management tools and methodologies.
Willingness to complete CITI training before interacting with participants and to recertify every three years.

Nice To Haves

Rare disease registry experience strongly preferred.
Prior experience standing up or rebuilding a registry’s governance, data access, and data-sharing framework.
Familiarity with rare disease registry models and best practices.
Experience preparing data and reports for federal funders and for grant renewals.
Experience working with industry/pharma partners under governed data-sharing arrangements.
Comfort adopting AI-assisted workflows within defined governance guardrails.

Responsibilities

Serve as the empowered operational leader of CHORUS and HHT Connect, providing strategic vision and day-to-day direction.
Rebuild and maintain the registry governance framework, including the Steering Committee and data governance/data access committees.
Plan and coordinate Steering Committee and governance meetings, including setting agendas, preparing materials, capturing minutes, and tracking follow-ups.
Develop, document, and maintain registry Standard Operating Procedures (SOPs), charters, data access policies, and a transparent data-sharing framework.
Manage all Institutional Review Board (IRB) communications and submissions, coordinate approvals and amendments across participating sites, and maintain audit-ready documentation.
Ensure registry operations comply with applicable regulations and protect participant confidentiality.
Coordinate site documentation, disclosures of interest, and approvals for manuscript and data-use review.
Complete CITI training before interacting with participants and recertify every three years.
Serve as the primary contact for data access requests, meeting with researchers to clarify data needs.
Create, negotiate, and finalize data use agreements (DUAs) in collaboration with legal and research leadership.
Operationalize a transparent data access and sharing model, including a defined fee structure.
Lead recurring Data Analytics meetings to coordinate execution and delivery of data access requests.
Manage the research data delivery schedule and workflow, ensuring contractual timelines are met.
Collaborate on standardized data exports and perform quality-assurance reviews before delivery.
Create and maintain external data-sharing sites, manage permissions, and deliver datasets.
Perform quality checks and produce quarterly registry reports for the Steering Committee and partners.
Until a Data Scientist/Registry Analytics Lead is hired, own first-pass analytics, building and running standardized exports and reporting templates with AI assistance.
Serve as the primary point of contact for the Studytrax vendor, managing the relationship, contract, support tickets, and roadmap.
Strategically leverage and optimize Studytrax to reduce friction and evaluate complementary external tools.
Oversee database configuration and reporting in Studytrax, partnering with the Database Administrator.
Supervise liaison activities to HHT Centers of Excellence and academic investigators.
Support the Steering Committee’s scientific work and coordinate manuscript and data-review processes.
Manage the operational realities of a multi-site program, including approvals, communications, and consistency of data collection.
Own participant recruitment and enrollment strategy for CHORUS/HHT Connect, setting targets and driving campaigns.
Track the enrollment funnel, remove barriers to participation, and implement retention strategies.
Coordinate registry-enabled recruitment support for trial partners.
Serve as a registry point of contact for Clinical Trial Network (CTN) partners and sponsors.
Deliver standardized, de-identified exports and quarterly reports to partners.
Collaborate across science, data analytics, community engagement, and operations teams.
Define scope, goals, deliverables, and metrics for registry projects.
Identify and manage project risks, issues, and dependencies, and propose mitigation strategies.
Adopt approved AI tools to draft documentation and materials under appropriate review.