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Tuesday, June 26 • 4:15pm - 5:15pm
#284: Using Advocacy Partnerships to Improve Real World Evidence in Clinical Trials

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Component Type: Session
Level: Intermediate
CE: ACPE 1.00 Knowledge UAN: 0286-0000-18-612-L04-P; CME 1.00; IACET 1.00; RN 1.00

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 Objectives

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.


Shazia Ahmad


Isabelle Lousada, MA

Mary Dunkle

Nadia Bodkin

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 Nadia Bodkin

Nadia Bodkin

President and Chief Executive Officer, EDSers United Foundation
avatar for Mary Dunkle

Mary Dunkle

Vice President of Educational Initiatives, National Organization For Rare Disorders (NORD)
Mary Dunkle is VP of Educational Initiatives for the National Organization for Rare Disorders (NORD), with responsibility for educational programs and resources for patients, caregivers, medical professionals, students and the public. She has been with NORD since 1999 and was previously... Read More →
avatar for Isabelle Lousada

Isabelle Lousada

Chief Executive Officer and President, Amyloidosis Research Consortium, United States
As a former patient, Lousada has spent 20 years dedicated to patient advocacy, accelerating drug development, and promoting awareness of rare diseases. Lousada founded the Amyloidosis Research Consortium (ARC) in 2015. ARC is a patient-focused nonprofit, harnessing the power of collaboration... Read More →

Tuesday June 26, 2018 4:15pm - 5:15pm EDT
Room 151AB Boston Convention and Exhibition Center 415 Summer Street, Boston, MA 02210 USA
  05: Patient Engagement, Session