Sources of RWD: An Introduction to Patient Registries
- Event Date: Dec. 04, 2020
- Event Time: 12:00 - 12:45 p.m. ET
- Event Location: Virtual, Zoom
Moderator: Elisabeth Oehrlein, PhD, MS, Senior Director, Research & Programs, National Health Council
- Robert McBurney, PhD, Chief Research Officer, Accelerated Cure Project for Multiple Sclerosis
- Vanessa Boulanger, MSc, Director of Research Programs, National Organization for Rare Disorders
What: This webinar introduces patient registries, one source of real-world data. Patient registries are diverse and there is no single, standardized definition. Registries are a collection of standardized information about a group of patients that may share a diagnosis or have another unifying characteristic. They are compiled to learn about that disease or condition, monitor outcomes and quality of care or for other research purposes. Patient registries may also be referred to as clinical registries, disease registries, and outcomes registries. Our speakers provide an overview and case examples of patient registries to demonstrate how they are used to generate RWE.
Who: This webinar is intended for patients, patient group staff, and others interested in learning about RWD and RWE. Learn more about the larger training series here.
This training is funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (16203-NHC).
A special thank you to the NHC’s RWE sponsors Amgen and Eli Lilly and Co. and PCORI RWE Advisory Board members.
The Agency for Healthcare Research and Quality’s (AHRQ) 4th edition User Guide.
Read it here.