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Virtual Event

Jun 14, 2020 9:00 AM - Jun 18, 2020 5:00 PM

(Eastern Standard Time)

Fort Washington, PA 19034

DIA 2020 Global Annual Meeting

Collecting Meaningful Patient Experience Data

Session Chair(s)

Shazia  Ahmad

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)

Kristen  Wheeden, MBA

Facilitator

Kristen Wheeden, MBA

American Porphyria Foundation, United States

Executive Director

Kristin  Anthony, MS

Facilitator

Kristin Anthony, MS

PTEN Hamartoma Tumor Syndrome Foundation , United States

President

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