Clinical Research Lead, Genetic Testing and Registry

Foundation Fighting Blindness•Durham, NC

3d•$112,000 - $125,000•Hybrid

About The Position

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.

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
Demonstrated expertise working with genetic data, including variant-level analysis
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

Nice To Haves

Experience with patient registries or sponsored genetic testing programs
Familiarity with rare disease genetics and inherited retinal diseases
Experience with research databases

Responsibilities

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.