How Do Patients and Other Multi-Disciplinary Stakeholders Collaborate to Develop Patient Registries which Accelerate Research?
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
United We Stand: How Can Patients and Other Stakeholders Develop Registries to Speed up Research Into Rare Diseases?