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Who Owns Long-Term Follow-Up? Addressing Stakeholder Gaps in Gene Therapy Evidence Generation
Session Chair(s)
Alen Agaronov, DRSC
Independent, United States
Multi-stakeholder research reveals why long-term follow-up fails in gene therapy despite new FDA requirements. Speakers across patient advocacy, clinical research, and medical ethics examine the social conception of long-term follow-up, its challenges, and practical solutions for sustainable participation and evidence generation.
Learning Objective : Identify scientific, operational and regulatory factors driving the growing significance of long-term follow-up (LTFU) in gene therapy; Compare stakeholder challenges and solutions in sustaining LTFU participation and data quality for gene therapy programs; Evaluate strategies to strengthen accountability and align incentives to ensure sustained LTFU participation.
Speaker(s)
Panelist
Patricia Furlong, BSN
Parent Project Muscular Dystrophy, United States
Founding President and Chief Executive Officer
Panelist
Dennis Akkaya
My Tomorrows, United States
Corporate Development
Panelist
Carolyn Riley Chapman, PHD
Freelance, United States
Independent Consultant
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