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November 30, 2015: ACTTION Presentation at International Rare Diseases Research Consortium


ACTTION was invited by the International Rare Diseases Research Consortium to participate in a workshop on patient-reported outcome (PRO) measures. The purpose of the workshop was to raise awareness within the rare diseases research community about regulatory requirements for the development of PRO measures as well as to identify how the rare diseases community can expedite the development of PRO measures. Kushang Patel, PhD, ACTTION Assistant Director, presented an overview of ACTTION and discussed the potential benefits of public-private partnerships in the development of PROs for rare diseases. A publication of the workshop's proceedings and recommendations is currently in preparation.