Dennis Akkaya’s Post

At this year’s DIA Global Annual meeting in Philadelphia next week, we will be holding the session “Who Owns Long-Term Follow-Up? Addressing Stakeholder Gaps in Gene Therapy Evidence Generation”. I will be moderating the discussion and alongside: - Pat Furlong: Founding President and CEO at Parent Project Muscular Dystrophy (PPMD) - Rafael Escandon, PhD, HEC-C: Founder- DG Bioethics - Carolyn Chapman PhD MS Independent Consultant; Faculty Affiliate at NYU Langone Section of Medical Ethics - Alen Agaronov: Independent Social Scientist As gene therapies continue to reshape the treatment landscape, the importance of clearly defining responsibility for long-term follow-up (LTFU) has never been greater. This session will dive into the evolving complexities of LTFU, exploring the operational, ethical, and evidentiary challenges that stakeholders face today, and how we can collectively move toward more sustainable, patient-centered approaches to long-term data collection and care.   Together with an exceptional group of panellists, we will discuss how industry, regulators, providers, and patient communities can better align to close critical gaps in evidence generation and ensure long-term outcomes are effectively captured and acted upon.   Please join us on Wednesday June 17th @ 4PM - Room 119 AB, for what promises to be a highly engaging and insightful discussion.   Looking forward to seeing you there!   #LTFU #GeneTherapy #DIA2026