A Patient-Driven Registry Focused on Health-Related Quality of Life Data

President and CEO of the PKD Foundation Susan Bushnell, Vice President of Research Programs at PKD Foundation Elise Hoover, and Senior Director of Global Strategic Planning for IQVIA’s Integrated Health Practice David Voccola, discuss the new registry, how it is leveraging technology to enable patients to drive insights into their condition, and the challenges it needs to overcome.