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- W4379981572 abstract "The European Cystic Fibrosis Society Patient Registry (Registry) contains data of over 50,000 patients from 40 countries. High quality data is essential for epidemiological research, pharmacovigilance studies and the annual reports. We compared the Registry data from 2021 with the patient health record (random patient list generated by the Registry statisticians), and validated a subset of variables (demographics, genotype, anthropometric data, lung function, microbiology, medications and complications). In 2022, we visited 4 established national registries (in Czech Republic, Germany, Ireland, the Netherlands) and 3 countries, that input data directly in the Registry’s software (Croatia, Luxembourg and Slovakia). Of the 598 patients checked (6% of total patients in these countries), Transplantation, Burkholderia infections, Medications, Hemoptysis were 96–100% accurate. Lung function, Pseudomonas infections, Inhaled antibiotics, Liver disease had an accuracy of 90–95%, while genetic and anthropometric data were 85–89% accurate. The overall accuracy of data for 2021 is 94%. Factors that influence accuracy are organisation of the data collection process, quality of documentation available in the hospital and, for national registries, the software. We gained insight into the local documentation procedures, software, and identified areas that would benefit from revision or additional support, at both Registry and local level. The high quality of the Registry data is reflected by data validation. To further optimise data quality we advocate structured documentation of patient data and provide regular training on the variable definitions and parameters for the users." @default.
- W4379981572 created "2023-06-10" @default.
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- W4379981572 date "2023-06-01" @default.
- W4379981572 modified "2023-09-27" @default.
- W4379981572 title "P137 Assessment of the quality of data in the European Cystic Fibrosis Society Patient Registry" @default.
- W4379981572 doi "https://doi.org/10.1016/s1569-1993(23)00512-x" @default.
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