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Collecting Better Patient Experience Data: Lessons Learned from Patient Organizations
Session Chair(s)
Laura Trutoiu, PHD
Director of Research
The Association For Creatine Deficiencies, United States
We will present methods and success stories from three rare disease patient organizations that have collected meaningful patient experience data. Panelists will share their insights and challenges for data collection including surveys and patient registries.
Learning Objective : Describe the importance of participating in registries and the methods by which data is collected; Identify strategies for overcoming the challenges of patient engagement to help provide pathways towards accelerating rare disease research.
Speaker(s)
Panelist
Monica Weldon
Bridge the Gap - SYNGAP Education and Research Foundation, United States
President and Chief Executive Officer
Panelist
Pamela Mace, RN
Fibromuscular Dysplasia Society of America, United States
Executive Director
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