The Influential Role of Patient Advocacy Groups in Registry Data Formats

RDCA-DAP's Metabolic Diseases Task Force presents, "The Influential Role of Patient Advocacy Groups in Registry Data Efforts." Led by Critical Path for Alpha-1 Antitrypsin Deficiency (CPA-!) and Critical Path for Lysosomal Diseases Executive Director Amanda Klein, PharmD, this task force is dedicated to standardizing and integrating mitochondrial and inherited metabolic diseases data into RDCA-DAP, optimizing clinical trial data, and serving other unmet needs in inherited metabolic diseases.
About Critical Path Institute
C-Path is an independent, nonprofit established in 2005 as a public-private partnership, in response to the FDA’s Critical Path Initiative. C-Path’s mission is to lead collaborations that advance better treatments for people worldwide. Globally recognized as a pioneer in accelerating drug development, C-Path has established numerous international consortia, programs and initiatives that currently include more than 1,600 scientists and representatives from government and regulatory agencies, academia, patient organizations, disease foundations and pharmaceutical and biotech companies. With dedicated team members located throughout the world, C-Path’s global headquarters is located in Tucson, Arizona and C-Path’s Europe subsidiary is headquartered in Amsterdam, Netherlands. For more information, visit c-path.org.
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