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- Elliott C Dasenbrook and Gregory S Sawicki.
- Cleveland Clinic Respiratory Institute, Cleveland, OH, United States.
- J. Cyst. Fibros. 2018 Jul 1; 17 (4): 433-440.
AbstractCystic Fibrosis (CF) patient registries are valuable data sources for researchers studying the natural history, treatment paradigms, and long-term health outcomes of individuals with CF. In this review, we discuss the role of CF patient registries in facilitating comparative effectiveness research, particularly evaluating therapies and variation in health care delivery. We also discuss the limitations of registry-based research, particularly indication bias, as well as statistical methods that can be used to address these issues.Copyright © 2018 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
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