ISPOR Taxonomy of Patient Registries: Classification, Characteristics, and Terms

ISPOR_Taxonomy-book-covers_New LogoWhat exactly is a patient registry? How is it different from a randomized controlled trial? Who are the stakeholders in patient registries? What do you do about missing data? How do you ensure quality?

The "ISPOR Taxonomy of Patient Registries: Classification, Characteristics, and Terms" demystifies the world of patient registries by providing a working definition and describing distinguishing characteristics of a patient registry. It also defines terms used in the design, development, and implementation of registries and the terms used in the analysis, reporting and publishing of registry data. Each term includes a brief definition, a broader explanation, the associated values and uses, and concludes with a discussion of issues or conflicts related to the term.

The taxonomy's terminology sections provide an overview of patient registries from start to finish, leading the reader chronologically through the process of registry design, development, and implementation. Terminology on registry data is organized similarly with initiation of the analysis plan through reporting and dissemination of registry-based studies. In this manner the reader will understand all the steps involved and be able to better plan registry development and research. The taxonomy will contribute to standardizing the language used in the patient registry field and improve registry development and research.

The ISPOR Patient Registry Special Interest Group developed this book for healthcare professionals, students, decision makers, and outcomes researchers.

The citation for this book is:  Polygenis D, ed. ISPOR Taxonomy of Patient Registries: Classification, Characteristics and Terms.  Lawrenceville, NJ; 2013.

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Information on the Authors

Editor-in-Chief:  Dimitris Polygenis, PharmD, Vice President, McKesson Specialty, McKesson Canada, Toronto, ON, CA

Assistant Editors:
Diana Frame, MPH, Founder, Frame Research, Brooklyn, NY, USA
Kirsten Hall Long, PhD, Senior Health Economist, K. Long Consulting, LLC, St. Paul, MN, USA
John McCormick, PhD, Senior Consultant, McKesson Specialty, McKesson Canada, Toronto, ON, CA

Managing Editor: Elizabeth Molsen RN, Director, ISPOR Scientific & Health Policy Initiatives, Lawrenceville, NJ, USA

Section Editors:
Chris Blanchette, PhD, MS, MA, Research Associate Professor, Department of Public Health Sciences, University of North Carolina - Charlotte, Charlotte, NC, USA 
Eric Gemmen, MA, Senior Director, Medical Affairs, Epidemiology & Outcomes Research, Quintiles, Inc., Rockville, MD, USA
Shital Kamble, PhD, MS, MBA, BPharm  Senior Outcomes Research Manager, Scientific Affairs, Real World & Late Phase Research, Quintiles Outcome, Rockville, MD, USA
Leanne Larson, MHA, Vice President, Evidence Development, PAREXEL International, Wilmette, IL, USA

Authors:
Elisa Alfieri, BA, MHA, Business Development Specialist, Lovelace Respiratory Research Institute, Kannapolis, NC, USA
Christopher M. Blanchette, PhD, MS, MA, Research Associate Professor, Department of Public Health Sciences, University of North Carolina - Charlotte, Charlotte, NC, USA
Maznah Dahlui, MD, MPH, PhD, Lecturer, University of Malaya, Kuala Lumpur, Malaysia
Donatus Ekwueme, PhD, Senior Health Economist, US Centers for Disease Control and Prevention, Division of Cancer Prevention, Sandy Springs, GA, USA
John Ellison, MS, Senior Manager, Health Economics Research and Medical Writing, Acclarent, Menlo Park, CA, USA
Alex Exuzides, PhD, Director, ICON Late Phase & Outcomes Research, San Francisco, CA, USA
Claudio Faria, PharmD, MPH, Director, Health Outcomes and Economics Research, Eisai, Inc., Quincy, MA, USA
Lauren Farmer, BS, MSc, Project Manager, Lovelace Respiratory Research Institute, Albuquerque, NM, USA
Diana Frame, MPH, Founder, Frame Research, Brooklyn, NY, USA
Paula Funk-Orsini, PhD, President, Arete Medical Outcomes Research, New York, NY, USA
Carl Gibbons, BSc, Group Health Economics Manager (Specialty Care), Roche Products Limited, Welwyn, Garden City, England, UK
Eric Gemmen, MA, Senior Director, Medical Affairs, Epidemiology & Outcomes Research, Quintiles, Inc., Rockville, MD, USA
Matthew Gordon, BA, Senior Director, Observational Research, PharmaNet, Deerfield, IL, USA
Joao Guerra, MD, MBA, Researcher, National School of Public Health, Lisboa, Portugal
Kirsten Hall Long, PhD, Senior Health Economist, K. Long Consulting, LLC, St. Paul, MN, USA
Elizabeth Hernberg Stahl, MSc, Founder, Late Phase Solutions Europe AB, Taby, Sweden
Nadja Hoebel, MSc, Manager Registry and Health Outcomes, Kendle GmbH, Munich, Germany
Shital Kamble, PhD, MS, MBA, BPharm, Senior Outcomes Research Manager, Scientific Affairs, Real World & Late Phase Research, Quintiles Outcome, Rockville, MD, USA
Leanne Larson, MHA, Vice President, Evidence Development, PAREXEL International, Wilmette, IL, USA 
Grace Wang Leung, MPH, International l Payer Strategy Leader, Genentech, Inc., South San Francisco, CA, USA
Joanna Lis, PhD, MSc, Director of Public Affairs and Market Access Dept., Sanofi-Aventis Sp. z o.o., Warsaw, Poland 
Yvonne Lis, PhD, Consultant, PAREXEL International, Uxbridge, England, UK
Steven Lister, MA, BA, Senior Health Economic & Outcomes Research Manager, Bristol-Myers Squibb, Uxbridge, UK
Neal Mantick, BS, MSc, Senior Director, Observational Research, PAREXEL International, Waltham, MA, USA
John McCormick, PhD, Senior Consultant, McKesson Specialty, McKesson Canada, Toronto, ON, CA
Elizabeth Molsen RN, Director, Scientific & Health Policy Initiatives, ISPOR, Lawrenceville, NJ, USA
Chris Pashos, PhD, Vice President, United BioSource Corporation, Lexington, MA, USA
Anuprita Patkar, PhD, Associate Director, Ethicon, Princeton, NJ, USA
Dimitris Polygenis, PharmD, Vice President & General Manager, Pharmaceutical Solutions, McKesson Canada, Toronto, ON, CA
Matthew Reaney, MSc, BSc, Global Health Outcomes Scientist, Endocrine, Eli Lilly, Windlesham, UK
Gabriel Sandblom, MD, PhD, Ward Physician, Department of Surgery, University Hospital - Lund, Lund, Sweden
Adithya Sivaraju, MD, Neurologist, University of Medicine and Dentistry in New Jersey, Newark, NJ, USA
Kathryn Starzyk, MSc, BA, Director of Scientific Affairs, Outcome Sciences, Outcome Sciences, MA, USA
Sally Thompson, PhD, MSc, Outcomes Research Director, Pfizer Ltd, Surrey, UK


 

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