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How Do Patients and Other Multi-Disciplinary Stakeholders Collaborate to Develop Patient Registries which Accelerate Research?
Session Chair(s)
Steven L. Roberds, PhD
Chief Scientific Officer
Tuberous Sclerosis Alliance, United States
This session will include examples of enhanced patient registry design and implementation by bringing together diverse stakeholders, including industry, regulators, researchers, clinicians, patients, families, and patient advocacy groups. Patient engagement is included at each stage of the process.
Learning Objective : Describe ways in which patient engagement can facilitate development of registry governance to satisfy multiple stakeholder priorities; Identify at least three methods used to involve and align multiple stakeholders in registry design and governance; Discuss challenges of designing registries for rare disorders and ways to help address such challenges.
Speaker(s)
United We Stand: How Can Patients and Other Stakeholders Develop Registries to Speed up Research into Rare Diseases?
Stella Blackburn, MD, MA, MSc, FFPM, FISPE, FRCP
Consultant, United Kingdom
Strategy
Patient Registry Data Governance: Considering the Priorities of a Diverse Group of Stakeholders
Kate Avery, MPH
Beyond Celiac, United States
Director of Research and Patient Engagement
EMA Perspective
Tânia Teixeira, PharmD
European Medicines Agency, United States
EMA Official at the FDA
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