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Volume 40; 2018
Review Registry-based stroke research in Taiwan: past and future
Cheng-Yang Hsieh, Darren Philbert Wu, Sheng-Feng Sung Epidemiol Health. 2018;40:e2018004.
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Review Rapid qualitative review of ethical issues surrounding healthcare for pregnant women or women of reproductive age in epidemic outbreaks
Patrik Hummel, Abha Saxena, Corinna Klingler Epidemiol Health. 2018;40:e2018003.
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Stroke registries are observational databases focusing on the clinical information and outcomes of stroke patients. They play an important role in the cycle of quality improvement. Registry data are collected from real-world experiences of stroke care and are suitable for measuring quality of care. By exposing inadequacies in performance measures of stroke care, research from stroke registries has changed how we manage stroke patients in Taiwan. With the success of various quality improvement campaigns, mortality from stroke and recurrence of stroke have decreased in the past decade. After the implementation of a nationwide stroke registry, researchers have been creatively expanding how they use and collect registry data for research. Through the use of the nationwide stroke registry as a common data model, researchers from many hospitals have built their own stroke registries with extended data elements to meet the needs of research. In collaboration with information technology professionals, stroke registry systems have changed from web-based, manual submission systems to automated fill-in systems in some hospitals. Furthermore, record linkage between stroke registries and administrative claims databases or other existing databases has widened the utility of registry data in research. Using stroke registry data as the reference standard, researchers have validated several algorithms for ascertaining the diagnosis of stroke and its risk factors from claims data, and have also developed a claims-based index to estimate stroke severity. By making better use of registry data, we believe that we will provide better care to patients with stroke.
This article describes, categorizes, and discusses the results of a rapid literature review aiming to provide an overview of the ethical issues and corresponding solutions surrounding pregnancies in epidemic outbreaks. The review was commissioned by the World Health Organization to inform responses to the Zika outbreak that began in 2015. Due to the urgency of the response efforts that needed to be informed by the literature search, a rapid qualitative review of the literature published in PubMed was conducted. The search and analysis were based on the operationalization of 3 key concepts: ethics, pregnancy, and epidemic outbreak. Ethical issues and solutions were interpreted within a principlist framework. The data were analyzed using qualitative content analysis. The search identified 259 publications, of which the full text of 23 papers was read. Of those, 20 papers contained a substantive part devoted to the topic of interest and were therefore analyzed further. We clustered the ethical issues and solutions around 4 themes: uncertainty, harms, autonomy/liberty, and effectiveness. Recognition of the identified ethical issues and corresponding solutions can inform and improve response efforts, public health planning, policies, and decision-making, as well as the activities of medical staff and counselors who practice before, during, or after an epidemic outbreak that affects pregnant women or those of reproductive age. The rapid review format proved to be useful despite its limited data basis and expedited review process.

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