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Collecting Meaningful Patient Experience Data
Session Chair(s)
Shazia Ahmad
Head of Site and Patient Engagement
Argenx, United States
This discussion will demonstrate how patient advocacy groups can be leveraged for critical information beyond protocol design and for capturing meaningful experience data from standard clinical practice.
Learning Objective : Review and discuss how to work with advocacy groups to facilitate the collection of meaningful patient experience data and clinical validation; Identify the type of information that can be learned from advocacy groups that can influence collaboration and optimization to address unmet needs, especially in rare disease patient populations.
Speaker(s)
Facilitator
Kristen Wheeden, MBA
American Porphyria Foundation, United States
Executive Director
Facilitator
Kristin Anthony, MS
PTEN Hamartoma Tumor Syndrome Foundation , United States
President
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