Clinical Research Lead, Genetic Testing and Registry

Purpose: The Clinical Research Lead helps drive the Foundation Fighting Blindness’ genetic testing program and My Retina Tracker® registry by coordinating with laboratory and scientific partners, managing data access requests, and contributing to strategic program evaluation while ensuring all work complies with contracts, standard operating procedures, and regulatory standards.

Primary Responsibilities: The following are representative of the duties and responsibilities associated with this position and are not meant to be an all-inclusive list:

• Serve as the primary point of contact for the sponsored genetic testing program, including management of relationships with laboratory partners and coordination of case identification activities
• Use registry data to identify relevant cases that support sponsored genetic testing partnerships and fulfill data access requests from scientific collaborators.
• Manage scientific partnerships, including contracting, data-sharing agreements, and ongoing relationship stewardship.
• Build analytic datasets for scientific partnerships and data access requests, collaborating with internal team members who manage data infrastructure, cleaning, and import tools.
• Contribute to the strategic evaluation of the genetic testing program, including analysis of program performance, partnership value, and potential alternative models to inform future funding and program decisions
• Develop regular scientific publications and accessible research insights to be shared with registry participants and the broader community
• Support the scientific activities of the My Retina Tracker® registry program, including annual review and update of data collection modules in collaboration with registry team members
• Contribute to the development of policies and standard operating procedures, pertaining to data access, data privacy, and protection
• Support annual priority and budget planning alongside the SVP and registry team.
• Perform additional responsibilities as needed to support program success.

Requirements

• Master of Science in Genetic Counseling (MSGC) or equivalent advanced degree in genetics, genomics, or a related life science field
• Minimum 3 years of post-degree experience in a research, industry, or patient advocacy setting; experience with patient registries or sponsored genetic testing programs a plus
• Demonstrated expertise working with genetic data, including variant-level analysis; familiarity with rare disease genetics and inherited retinal diseases preferred
• Analytical mindset with an interest in program evaluation, strategic thinking, and evidence-based decision-making beyond day-to-day program operations
• Strong interpersonal, verbal, and written communication skills; proven ability to work effectively with laboratory partners, scientific collaborators, and patient communities
• Highly organized, detail-oriented, and able to manage multiple projects simultaneously in a fast-paced environment
• Proactive, self-directed, and comfortable working independently in a remote setting
• Proficiency with Microsoft Office; experience with research databases preferred

Position Specifics:

• Full-time (40 hours/week); Exempt; No Direct Reports
• Work Environment: This is a work‑from‑home position, but not a “work from anywhere” role. Candidates must reside in the DC/MD region or the NC Triangle area to support collaboration and occasional in‑person activities.
• Starting Salary: $112k-$125k annually. The range considers a wide range of factors that are considered in making compensation decisions, including but not limited to: geographic markets, skill sets, experience, and internal equity to comparable roles.
• Monthly technology stipend provided
• Annual incentive bonus eligible