Registries For Evaluating Patient Outcomes

This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

The purpose of this revised fourth edition is to incorporate information on new methodological and technological advances into the existing chapters and to consolidate and organize the content into a format that emphasizes the key principles of registry design, operations, and analysis. Two new chapters were added (Registry Governance and Selecting and Defining Outcome Measures for Registries), and existing chapters were updated as part of this effort.

This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

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This Addendum to the Third Edition of the Registries for Evaluating Patient Outcomes: A User’s Guide presents new, emerging themes related to designing and conducting registries. First published in 2007, the User’s Guide, with translations available in Chinese and Korean, serves as a reference for planning, developing, maintaining, and evaluating registries developed to collect data about patient outcomes. The second (2010) and third (2014) editions incorporated updates to existing topics and included new chapters on methodological and technological advances in registry science. This Addendum has five new chapters that address emerging topics in registries, including increasing the focus on patients in registries including engaging with patients throughout the design and conduct of registries, methodological considerations for using digital health technologies, designing patient-centric studies, and building registry networks. Discover Related products: Registries for Evaluating Patient Outcomes: A Users Guide Volume 1, Third Edition (ePub format) available from Apple iBookstore, Barnes and Noble.com (Nook eBookstore), Google Play eBookstore, Overdrive, EBSCOhost, ProQuest-- Please use ISBN: 978158487634338 to search for this title in these platforms. Registries for Evaluating Patient Outcomes: A Users Guide Volume 1 Third Edition (MOBI format) Registries for Evaluating Patient Outcomes: A Users Guide Volume 2 Third Edition (ePub eBook) available from Apple iBookstore, Barnes and Noble.com (Nook eBookstore), Google Play eBookstore, Overdrive, EBSCOhost, ProQuest-- Please use ISBN: 978158487634345 to search for this title in these platforms. Registries for Evaluating Patient Outcomes: A Users Guide Volume 2 Third edition (ePub format) TeamSTEPPS 2.0 Pocket Guide: Team Strategies & Tools to Enhance Performance and Patient Safety ( Sold as print units in packages of 10)