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

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 sharing model — including a defined fee structure — so CHORUS data can be shared with external collaborators in a streamlined, governed way.

•   Analytics coordination. Lead recurring Data Analytics meetings to coordinate execution and delivery of data access requests.

Data Delivery & Quality Assurance

•   Delivery schedule. Manage the research data delivery schedule and workflow, ensuring contractual timelines are met.

•   Exports & QA. Collaborate with the Data Scientist / Registry Analytics Lead on standardized data exports, run exports as needed, and perform quality-assurance reviews before every delivery.

•   Secure sharing. Create and maintain external data-sharing sites, manage permissions and dataset lifecycles, deliver datasets, track delivery communications, and archive data as required.

•   Reporting. Perform quality checks and produce quarterly registry reports for the Steering Committee and partners and support metrics for government reporting and grant renewals.

•   Interim analytics ownership. Until the Data Scientist / Registry Analytics Lead is hired, own first-pass analytics directly, building and running standardized exports, summary statistics, feasibility counts, and reporting templates with AI assistance (e.g., Claude Cowork) under appropriate review. Studytrax Vendor & Platform Management

•   Vendor management. Serve as Cure HHT’s primary point of contact for the Studytrax vendor, managing the relationship, contract/scope, support tickets, and roadmap, and hold the vendor accountable to Cure HHT’s data and reporting needs.

•   Platform optimization. Strategically leverage and optimize Studytrax (forms, workflows, reporting) to reduce friction, and evaluate complementary external tools and workflows needed to support the research program.

•   Data operations. Oversee database configuration and reporting in Studytrax, partnering with the Database Administrator function to implement standardized validation protocols and QA.

Academic Center & Investigator Engagement

•   Center liaison. Supervise liaison activities to HHT Centers of Excellence, academic investigators, and the physician/research community, coordinating registry participation, onboarding, and ongoing engagement across sites.

•   Scientific coordination. Support the Steering Committee’s scientific work, coordinate manuscript and data-review processes, and help translate registry data into grant proposals, publications, and program reviews.

•   Multi-site coordination. Manage the operational realities of a multi-site program — approvals, communications, and consistency of data collection across participating institutions.

Recruitment, Enrollment & Retention

•   Recruitment leadership. Own participant recruitment and enrollment strategy for CHORUS/HHT Connect, setting targets and driving campaigns in coordination with community engagement and the Clinical Trials Network.

•   Pipeline & retention. Track the enrollment funnel, remove barriers to participation, and implement retention strategies to sustain a high-quality, growing registry population.

•   Clinical Trials Network linkage. Coordinate registry-enabled recruitment support for trial partners, ensuring compliant, well-documented handoffs to sites and CROs.

Partner Engagement (Clinical Trial Network & Sponsors)

•   Partner liaison. Serve as a registry point of contact for CTN partners and sponsors, managing expectations and ensuring successful, governed data handoffs.

•   Standardized deliverables. Deliver standardized, de-identified exports and quarterly reports to partners under the agreed data access framework.

•   Cross-functional alignment. Collaborate across science, data analytics, community engagement, and operations teams to align on deliverables, timelines, and compliance.

Project & Program Management

•   Project delivery. Define scope, goals, deliverables, resource needs, and metrics for registry projects in collaboration with stakeholders, and drive delivery through cross-functional collaboration.

•   Risk management. Identify and manage project risks, issues, and dependencies; propose and implement mitigation strategies; and escalate to leadership with proposed solutions.

•   AI-assisted workflows. Adopt approved AI tools (e.g., Claude Cowork) to draft documentation, meeting notes, and first-pass materials under appropriate human review and governance guardrails.

Requirements

QUALIFICATIONS

Required

•   Bachelor’s or higher degree in a health or social science or related field, or an equivalent combination of education and experience, with 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, rare disease registry experience strongly preferred, 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.

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.

Benefits

Salary range: $90,000 - $118,000, depending on relevant experience, plus a comprehensive benefits package including medical, dental, and vision benefits, generous PTO, remote work, and opportunities for professional development.