VP, Research & Clinical Affairs

POSITION OVERVIEW

Reporting to the CEO and serving on the leadership team, the VP, Research & Clinical Affairs provides management and oversight of the HHT Clinical Trial Network and Cure HHT's biotech and pharma partnerships. The role is highly visible across the HHT research community-leading clinicians and institutions, and the companies funding and commercializing HHT therapeutics.

Cure HHT's therapeutics work has reached commercial scale. Our CTN materials document the constraint directly: leadership and a very small team have been stretched too thin, and Cure HHT needs more trial-ready Centers of Excellence, more registry and biospecimen capacity, and deeper expertise in trial administration, data science, and data management. The CTN membership model—now generating committed, multi-year revenue—is designed to fund exactly this build-out.

This role leads it.

The VP owns the commercial and operational therapeutics engine: the external CTN member relationships, the delivery of each member’s customized program, and clinical-trial operations across the Centers of Excellence. Working in close partnership with the COO, the VP ensures we can recruit patients, put on conferences and education, and meet each member’s needs—freeing the Senior Director, Research Programs & Grants Management to go deep on Cure HHT's internal science, registry/biorepository assets, and grants.

• Serve as the primary relationship owner for each CTN member; assign and oversee a dedicated day-to-day program lead per member, or serve in that capacity directly.
• Design and deliver each member’s customized program against its sponsorship agreement—e.g., patient-focused clinical-trial education webinars, CoE education sessions on trial design, drug profile, and trial readiness, social-media and email campaigns, conference and symposium sponsor ships (e.g., ASH, EHA), research sign-up pages, patient and caregiver workshops, and podcast/video content.
• Run monthly member update meetings and Annual Reviews; respond to member questions within contractual time frames; track and report delivery against each agreement’s commitments.
• Retain and grow the CTN: cultivate the member pipeline, and prospect and help close additional members within CEO-approved pricing.

• Accelerate patient recruitment and referrals to trial sites; manage prescreening, referral routing, and CTN-CRO handoffs; coordinate directly with site principal investigators and research staff.
• Lead trial-ready operations across the Centers of Excellence: site identification, qualification, activation, and on-the-ground operational support.
• Coordinate with CROs and biotech/pharma sponsors on trial design support and execution.

• Manage two Research Coordinators aligned to member portfolios (recruitment acceleration, prescreening, site coordination, campaign management, and material tracking).
• Manage biostatistics and regulatory consultants supporting trial design, endpoints, and regulatory strategy.
• Manage the Senior Director, Research Programs & Grants Management: set priorities, hold the internal research portfolio and grants to milestones, and provide the coaching and guardrails that support the Senior Director’s growth into greater leadership.
• Build the clinical-trial team over time as membership revenue supports.

• Own the commercial positioning and management of the patient registry, shaping and accelerating it to meet members’ future regulatory, payor, and commercial needs, in coordination with the Senior Director, who owns registry/biorepository scientific operations and data integrity.
• Govern member…