Direct-to-patient registry and other patient-centric designs

Abstract

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.