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Innovative Approaches to Patient Registries for Evaluating Outcomes
Session Chair(s)
Michelle Leavy, MPH
Director, Scientific Relations
United States
Patient registries are increasingly being used to conduct research on comparative effectiveness, patient outcomes, and safety. Innovative approaches to designing and operating registries are critical to support their growing use and the increasing complexity of the research questions that they address. In this forum, we will summarize key points in “Registries for Evaluating Patient Outcomes,” a widely used guide on registry best practices, and present case examples on leveraging patient-generated registries, linking registries with biorepositories, conducting multinational registries, and designing registries using external electronic medical record data. In addition, presenters will discuss an emerging area of debate – registration of patient registries in systems such as ClinicalTrials.gov, the Registry of Patient Registries (RoPR) and the ENCePP E-Register of Studies. We will discuss the rationale for registration and review and compare options for registration, both in the US and globally.
Learning Objective : Explain the importance of using registries for comparative effectiveness and outcomes research; Discuss new approaches to using patient registries that maximize efficiency and quality; Describe the rationale for registering observational studies, including patient registries; Discuss the options for registration in the US and globally.
Speaker(s)
New Approaches and Emerging Challenges in Patient Registry Design and Conduct
Michelle Leavy, MPH
United States
Director, Scientific Relations
Evaluating an Innovative Approach to a Prospective Patient Registry Design Using Electronic Medical Record Data
Susan Meredith Fish, MS
Genentech, A Member of the Roche Group, United States
Senior Statistical Programmer Analyst
Registration of Observational Studies: Where, Why, and How?
Elise Berliner, PhD
Oracle Life Sciences, United States
Global Senior Principal for Real World Evidence Strategy
Registration and Transparency: Experience with the ENCePP E-Register of Studies (EU PAS Register)
Pierre Engel, PharmD, PhD, MPH
Quintilesims, France
Director Epidemiology
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