Category 6: Standards for Data Registries
Learning Objectives
Cognitive: Provide an understanding of what a patient data registry is and how it can be used in PCOR; Outline the advantages and disadvantages of using existing data registries for PCOR; Explain the importance of systematic patient enrollment and follow-up data; and Describe methods to ensure data quality and outcome validity
Attitudinal: Commit to data safety and security protection for patient registries and Value steps to ensure data quality in the collection and management of registry data
Skills: Design data collection tools that capture relevant confounding variables; Design processes to ensure consistent and standardized data collection throughout a study; Select appropriate methods to conduct cohort tracking with the goal of minimizing losses to follow-up; and Develop systems to modify registry protocols
Learning Modules
This category contains the curriculum Introduction and eight main modules. Learn about the instructors for this curriculum.
- Introductory Lecture: Prepared and presented by Jodi Segal, MD, MPH
- Learning Modules: Prepared and presented by Alison Klein, PhD, MHS
Module 1: Statement of Standards
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Module 2: Review of Objectives
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Module 3: Registry Definition and Terms
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Module 4: Patient Enrollment
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Module 5: Registry Data Collection and Data Sources
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Module 6: Data Quality Assurance and Security
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Module 7: Patient Follow-Up
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Module 8: Using Existing Registries
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Interview with Nancy Kass, ScD, Phoebe R. Berman Professor of Bioethics and Public Health in the Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, and Deputy Director for Public Health in the Berman Institute of Bioethics on the ethics of creating data registries
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Category 6 Self-Assessment
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Posted: February 2016
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