Director, Registry Operations

🔥 14 hours ago

🇺🇸 United States – Remote

💵 $90k - $118k / year

⏰ Full Time

🔴 Lead

⚙️ Operations

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Cure HHT

WebsiteLinkedInAll Job Openings

11 - 50 employees

🏥 Healthcare

💼 Consulting

📦 Logistics

Healthcare • Consulting • Logistics

Cure HHT is a non-profit organization dedicated to raising awareness, funding research, and advancing treatment for Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome. This genetic disorder affects blood vessels, leading to severe health issues if not diagnosed and treated early. Established in 1991, Cure HHT supports patients through education, resources, support groups, and conferences, while driving scientific research through grants and partnerships. It aims to improve the lives of those impacted by HHT globally and seeks donations to continue its transformative work in research and patient care.

📋 Description

• Serve as the empowered operational leader of the CHORUS and HHT Connect registries • Provide strategic vision and day-to-day direction and drive execution against a multi-year CHORUS roadmap • Rebuild and maintain registry governance frameworks, committees, policies, SOPs, charters, and data-sharing processes • Plan and run Steering Committee and governance meetings, including agendas, materials, minutes, decisions, follow-ups, and document version control • Manage IRB communications, submissions, approvals, amendments, and audit-ready regulatory documentation across participating sites • Ensure regulatory compliance and participant confidentiality, including data tokenization and de-identification workflows • Coordinate site documentation, disclosures of interest, and manuscript and data-use review approvals • Serve as primary contact for data access requests and clarify data needs with researchers and project sponsors • Create, negotiate, and finalize data use agreements and manage the DUA pipeline • Operationalize a transparent data access and sharing model, including a fee structure • Lead recurring Data Analytics meetings • Manage research data delivery schedules, standardized exports, quality assurance reviews, secure sharing sites, permissions, dataset lifecycles, communications, and archiving • Produce quarterly registry reports and support government reporting and grant renewals • Own first-pass analytics until the Data Scientist / Registry Analytics Lead is hired • Manage the Studytrax vendor relationship, contract/scope, support tickets, and roadmap • Optimize Studytrax forms, workflows, and reporting and evaluate complementary tools • Oversee Studytrax database configuration and reporting and implement validation and QA protocols • Supervise liaison activities with HHT Centers of Excellence, academic investigators, and the physician/research community • Coordinate registry participation, onboarding, engagement, scientific work, manuscript and data review, and multi-site operations • Own participant recruitment and enrollment strategy, set targets, drive campaigns, track the enrollment funnel, and implement retention strategies • Coordinate registry-enabled recruitment support for Clinical Trial Network partners • Serve as registry point of contact for CTN partners and sponsors and manage governed data handoffs • Deliver standardized de-identified exports and quarterly reports to partners • Define project scope, goals, deliverables, resources, and metrics and drive cross-functional delivery • Identify and manage risks, issues, and dependencies and implement mitigation strategies • Adopt approved AI tools such as Claude Cowork for documentation, meeting notes, and first-pass materials under human review

🎯 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 • Experience with multi-site clinical trials, regulatory, data analytics, and operations exposure • Hands-on experience with patient registries; rare disease registry experience strongly preferred • 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 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 recertify every three years • Prior experience standing up or rebuilding a registry’s governance, data access, and data-sharing framework preferred • Familiarity with rare disease registry models and best practices preferred • Experience preparing data and reports for federal funders and grant renewals preferred • Experience working with industry/pharma partners under governed data-sharing arrangements preferred • Comfort adopting AI-assisted workflows within defined governance guardrails preferred

🏖️ Benefits

• Comprehensive benefits package • Medical benefits • Dental benefits • Vision benefits • Generous PTO • Remote work • Opportunities for professional development