The Powerful and Evolving Role of Patient Advocacy Groups in Clinical Research

A major goal of patient advocacy groups is to address the unmet needs of patients with cancer or rare diseases by providing access to the most effective drugs. In recent years, patient advocacy groups have expanded their influence over the drug development continuum from discovery to approval to market entry. Many groups directly fund, help design, or recruit patients to participate in clinical trials. This webinar reviews the history of patient advocacy groups in advancing clinical research and examines the evolution of their role in light of recent and pending legislative and regulatory changes in the United States and European Union. Included is a discussion of how patient advocacy groups and industry can join to respond most effectively to these anticipated changes. Presenters are Susan Stein, MPH, a member of the Board of Directors of worldwide patient advocate umbrella organization Global Genes, and Juliet Moritz, MPH, Executive Director of Strategic Drug Development for Rare Diseases at Premier Research.