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.

It carries primary accountability for retaining and growing CTN membership, delivering on member agreements, standing up trial-ready operations, and converting Cure HHT’s research assets into durable, well-governed commercial partnerships. The VP manages the internal therapeutics team, two Research Coordinators, biostatistics/regulatory consultants, and the Senior Director, Research Programs & Grants Management, and coordinates day-to-day with the COO and Grants & Finance Specialist on contracts, SOWs, and invoicing.

WHY THIS ROLE EXISTS

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.

ESSENTIAL FUNCTIONS

CTN Member Relationships & Program Delivery

• 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 sponsorships (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 timeframes; 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.

Patient Recruitment & Trial Operations

• 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.

Team Leadership

• 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.

Registry, Biospecimens & Data (Commercial)

• 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 access to registry data, biospecimens (at fully-loaded cost), and the clinical-trial app, respecting all patient-data protections.

Commercial, Financial & Compliance

• Collaborate with the COO on member contracts, SOWs, invoicing and payment schedules, and conference/event logistics; ensure accurate, timely operational and financial reporting on the therapeutics function.
• Ensure rigorous compliance across all activity: anti-kickback and OIG guidance (including on sponsored genetic-testing programs and any referral-related activity), IRS rules on tax-exempt organizations’ presentation of for-profit sponsor branding, debarment/exclusion screening, confidentiality obligations, and research/IRB standards.

External Representation & Advocacy

• Represent Cure HHT as the operational and commercial lead for therapeutic partnerships, including in regulatory-advocacy contexts (e.g., patient-focused drug development engagement).

Requirements

QUALIFICATIONS

Required

• Master’s degree in a scientific or healthcare discipline required.
• 10+ years of relevant experience in pharma, biotech, and/or CRO clinical-research operations.
• Demonstrated success owning commercial or partnership relationships with pharma/biotech sponsors.
• CRO oversight and clinical-trial operations experience.
• Strong leadership and people-management skills, with a track record of building and managing teams and cross-functional consultants.
• Excellent organizational skills, attention to detail, and the ability to manage multiple high-stakes priorities and member relationships simultaneously.
• Excellent oral, written, and interpersonal communication skills.
• Ability to travel as necessary (~30%).

Preferred

• Advanced degree (PhD, MD, MPH, or MBA).
• Working knowledge of nonprofit/for-profit sponsorship compliance (anti-kickback, OIG, tax-exempt rules).
• Experience in rare-disease or vascular-disease settings.
• Experience working with CRO partners and principal investigators at trial sites.
• Experience with consortium or clinical-network management.

Benefits

Salary range: $155,000 - $190,000 per year, depending on relevant experience, plus a comprehensive benefits package including medical, dental, and vision benefits, generous PTO, remote work, and opportunities for professional development.