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Monday, June 15 • 12:30pm - 1:00pm
#111 SL-CH: Collecting Meaningful Patient Experience Data

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Component Type: Workshop
Level: Intermediate

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 Objectives

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.


Shazia Ahmad


Kristen Wheeden, MBA

Kristin Anthony, MS

avatar for Shazia Ahmad

Shazia Ahmad

Senior Director, Patient and Physician Services, UBC, United States
Shazia Ahmad serves as a director on UBC’s Patient and Physician Services team. She brings to this role 20 years of experience in the healthcare industry. Shazia provides oversight and strategy on patient recruitment and retention as well as site feasibility and recruitment for... Read More →
avatar for Kristin Anthony

Kristin Anthony

President, PTEN Hamartoma Tumor Syndrome Foundation
Kristin Anthony, is the President of the PTEN Hamartoma Tumor Syndrome Foundation. Kristin is a non-profit leader with extensive management, marketing and healthcare experience. Rare disease and hereditary cancer advocate and speaker.
avatar for Kristen Wheeden

Kristen Wheeden

Executive Director, American Porphyria Foundation
Kristen Wheeden is the Executive Director of the American Porphyria Foundation (APF). The APF is a patient advocacy group that serves the porphyria community. The organization is dedicated to the health and well-being of all individuals affected by Porphyria.

Monday June 15, 2020 12:30pm - 1:00pm EDT
TBD Virtual Event Horsham, PA 19044