Director, Registry Operations

POSITION OVERVIEW

Cure HHT is the leading patient advocacy organization dedicated to hereditary hemorrhagic telangiectasia (HHT). CHORUS is Cure HHT’s flagship patient registry and natural-history data platform, supported by the HHT Connect community and built on the Studytrax data system in partnership with HHT Centers of Excellence and academic investigators. CHORUS is central to Cure HHT’s research mission and to its Clinical Trial Network (CTN), providing natural-history insights, feasibility data, and endpoint support to academic collaborators and industry partners. Following a comprehensive external evaluation, Cure HHT is rebuilding registry governance, analytics, and operations and is investing in dedicated in-house leadership for the program.

The Director, Registry Operations is the empowered day-to-day leader of the CHORUS and HHT Connect registries. This is a director-level role that owns registry operations, governance coordination, IRB and compliance workflows, vendor management, and the data access and data-sharing framework end to end. The role absorbs and internalizes duties previously delivered by Cure HHT’s registry consultant, establishing durable in-house capability where the organization previously relied on outside expertise.

The successful candidate is an experienced project manager from a rare disease registry, research, or multi-site clinical trials background who is comfortable leading without heavy supervision, interfacing directly with academic centers and investigators, driving participant recruitment and retention, and managing the registry vendor (Studytrax). They will help stand up and eventually oversee a small registry team and partner closely with the Data Scientist/Registry Analytics Lead to make CHORUS a well-governed, research-ready, and shareable data asset.

KEY RESPONSIBILITIES

Registry Operations, Strategy & Governance

•   Registry operations ownership. Serve as the empowered operational leader of CHORUS and HHT Connect, providing the strategic vision and day-to-day direction, and driving execution against a multi-year CHORUS roadmap modeled on leading rare disease registries.

•   Governance structure. Rebuild and maintain the registry governance framework — the Steering Committee, data governance/data access committees, and clear empowered documented decision making.

•   Committee coordination. Plan and run Steering Committee and governance meetings: set agendas, prepare materials, capture minutes and decisions, track follow-ups, and ensure version control of all registry documentation.

•   Policies & SOPs. Develop, document, and maintain registry SOPs, charters, data access policies, and a transparent, published data-sharing framework.

IRB, Regulatory & Compliance

•   IRB management. Manage all IRB communications and submissions, coordinate approvals and amendments across participating sites, and maintain complete, audit-ready documentation of approvals and regulatory correspondence.

•   Compliance & confidentiality. Ensure registry operations comply with applicable regulations and protect participant confidentiality, including support for data tokenization and de-identification workflows that keep data research-ready.

•   Site DOI & documentation. Coordinate site documentation, disclosures of interest, and the approvals needed for manuscript and data-use review.

•   CITI training. Complete CITI training before interacting with any participants and recertify every three years.

Data Access Requests, Agreements & Data Sharing

•   Primary point of contact. Serve as the primary contact for data access requests, meeting with researchers and project sponsors to clarify data needs.

•   Data use agreements. Create, negotiate, and finalize data use agreements from templates in collaboration with legal, data protection, and research leadership; own the DUA pipeline from request through execution.

•   Data access framework. Operationalize a transparent data access and