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What Medical Writers Need to Know About Patient Registries

Professional Techniques
Workshop profile:
This workshop was previously run under the title 'Patient Registries as a Source of Medical Information’. This workshop addresses medical writers who prepare publications based on the data from research databases, patient registries and other real-life data sources. Basic knowledge of the design of observational studies, epidemiological research and statistics is not critical, but would be beneficial.
To present the pros and cons of real-life research, to teach how to avoid over-interpretation of the study results, and to present these data effectively. Finally, to position patient registries as a complement to experimental studies.
Nowadays, real-life medical data sources such as research databases or patient registries are gaining in importance as a source of medical information, and medical writers are often involved in preparing manuscripts based on these data. However, it should be highlighted that the way these data are reported differs from the way the data from experimental trials are presented. This workshop focuses on the basic concepts of real-life medical research, the differences between the data from real-life settings and experimental trials, the ways of publishing them, and the issues medical writer must think of while writing such papers. Furthermore, it will present the overview of the main aspects of analysis and interpretation of the registry data, including specific statistical problems (but without going into mathematical details). The workshop will include examples of registries and relevant papers to illustrate the potential of this kind of research.