Foundation Fighting Blindness

Clinical Research

• 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.

Clinical Research Lead, Genetic Testing and Registry