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Using Advocacy Partnerships to Improve Real World Evidence in Clinical Trials
Session Chair(s)
Shazia Ahmad
Head of Site and Patient Engagement
Argenx, United States
This session will demonstrate how advocacy groups can be effectively leveraged for protocol design and in capturing valuable information from standard clinical practice-information that is real-world evidence driven and much needed to develop effective clinical trials.
Learning Objective : Discuss the importance of using advocacy groups to provide experiences in the real word setting outside of clinical trials that can help understand a disease and develop drugs more effectively; Distinguish the type of information that can be learned from these groups in real world evidence that can influence the development of better medications.
Speaker(s)
Panelist
Isabelle Lousada, MA
Amyloidosis Research Consortium, United States
Chief Executive Officer and President
Panelist
Mary Dunkle
National Organization For Rare Disorders (NORD), United States
Vice President of Educational Initiatives
Panelist
Nadia Bodkin
Rare Advocacy Movement, United States
Rare Disease Advocacy Professional
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