Menu Back toHow-Do-Patients-and-Other-Multi-Disciplinary-Stakeholders-Collaborate-to-Develop-Patient-Registries-That-Accelerate-Research

DIA 2018 Global Annual Meeting

How Do Patients and Other Multi-Disciplinary Stakeholders Collaborate to Develop Patient Registries which Accelerate Research?

    Session Chair(s)
      Steven L. Roberds, PhD

      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 : Discuss conflict in stakeholder priorities; Describe a process for developing data governance policies that meets the needs of diverse stakeholders, including patients
      Stella C.F. Blackburn, MD, MA, MSc, FFPM, FISPE, FRCP

      United We Stand: How Can Patients and Other Stakeholders Develop Registries to Speed up Research Into Rare Diseases?

      Stella C.F. Blackburn, MD, MA, MSc, FFPM, FISPE, FRCP

      • Vice President, Global Head of Early Access and Risk Management
      • IQVIA, United Kingdom
      Kate  Avery, MPH

      Patient Registry Data Governance: Considering the Priorities of a Diverse Group of Stakeholders

      Kate Avery, MPH

      • Director of Research and Patient Engagement
      • Beyond Celiac, United States
      Representative Invited

      EMA Perspective

      Representative Invited

      • European Medicines Agency, European Union, United Kingdom