Press release: “Genetic Alliance and the Pharmaceutical Research and Manufacturers of America (PhRMA) announced an initiative to explore the use of a technology-enabled, crowd-sourcing approach to patient engagement as a complement to ongoing patient-focused drug development efforts under the Prescription Drug User Fee Act (PDUFA V).
As part of the reauthorization of PDUFA, the U.S. Food and Drug Administration (FDA) committed to gain the patient perspective on 20 disease areas in public meetings to be held between 2012 and 2017.
After issuing a Request for Proposals, Genetic Alliance chose advocacy organizations representing three disease areas that will be the focus of FDA patient-focused drug development public meetings in 2014 and 2015. The patient communities in these three disease areas will pilot a crowd-sourcing, technology-enabled approach to gathering input from a diverse set of patients on key benefit-risk questions.
“Using the Platform for Engaging Everyone Responsibly (PEER), there is an opportunity to demonstrate the power of a secure, crowd-sourced approach to provide additional insight into patients’ experience with a disease or condition,” stated Sharon Terry, President and CEO of Genetic Alliance. “The organizations we selected are expert at broad and diverse engagement from the very people that have a vested interest in patient-focused drug development. We are excited to engage these communities.”
For more information about this initiative, visit http://www.geneticalliance.org/pfdd.
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