Dataset for Csulak et al. "Two decades of living with Echinococcus multilocularis: a clinical epidemiology study on human alveolar echinococcosis in Hungary"

This dataset belongs to the manuscript titled "Two decades of living with Echinococcus multilocularis: a clinical epidemiology study on human alveolar echinococcosis in Hungary". The manuscript has not been submitted to publication. The dataset contains a comprehensive README file (see 00_README_HAE.txt), a dataset of 40 HAE cases (see 01_Csulak_clinical_epi_data.csv), results of statistical analysis on the dataset (see 02_diagnostic_delay.pdf, 03_disease_outcome.pdf, 04_surgery.pdf, 05_ABZ_treatment.pdf, 06_ordinal_regression_model.pdf), diagrams of statistical calculations (see 07_Fig3_diagnostic_delay.jpg, 08_Fig4_disease_outcome.jpg, 09_Fig5_surgery.jpg, 10_Fig6_ABZ_treatment.jpg), and Figures of the manuscript (see 11_Fig1_HAE_MRI.jpg and 12_Fig2_histopathology_protoscoleces.jpg). Key summary points of the study Why carry out this study? Human alveolar echinococcosis (HAE) emerged in Hungary in the early 2000s. An unusual case number increase was experienced after 2018, when a comprehensive study was carried out on the epidemiology of HAE. We hypothesised that the conspicuous trend change was due to the improved disease awareness within the healthcare system, though neither the rising epidemiological risk could be excluded. What was learned from the study? The statistical model proved that the performance of the healthcare system improved; however, a lot of advanced-stage patients entered the healthcare system in both periods (before and after 2018). Knowledge dissemination campaigns could enhance the knowledge, attitude, and practice of the public, thus efficiency of prevention. A non-significant increase in case numbers was experienced in the southwestern region, which might have also contributed to the trend change of HAE. Ethical approval number: 07-03-2024/BM/2130-3/2024 (Committee for Scientific and Research Ethics of the Medical Research Council) Patients participating in this research were asked to provide informed consent before entering the study. Balázs Dezsényi ([e-mail]), the principal investigator of the recent, authorised multicentric study, was responsible for ensuring the ethical use of patients’ data. Concerning research ethics, the form of informed consent, and the ethical use of patients’ data, Balázs Dezsényi can provide additional information.本数据集隶属于未投稿的手稿《与多房棘球绦虫（Echinococcus multilocularis）共存二十年：匈牙利人类泡型棘球蚴病（human alveolar echinococcosis, HAE）临床流行病学研究》。数据集包含完整的README说明文件（详见00_README_HAE.txt）、40例人类泡型棘球蚴病病例数据集（详见01_Csulak_clinical_epi_data.csv）、针对该数据集的统计分析结果文件（详见02_diagnostic_delay.pdf、03_disease_outcome.pdf、04_surgery.pdf、05_ABZ_treatment.pdf、06_ordinal_regression_model.pdf）、统计计算绘图文件（详见07_Fig3_diagnostic_delay.jpg、08_Fig4_disease_outcome.jpg、09_Fig5_surgery.jpg、10_Fig6_ABZ_treatment.jpg）以及手稿配图（详见11_Fig1_HAE_MRI.jpg与12_Fig2_histopathology_protoscoleces.jpg）。 ### 研究核心总结要点 #### 研究开展背景 人类泡型棘球蚴病（human alveolar echinococcosis, HAE）于21世纪初在匈牙利首次出现。2018年后病例数出现异常增长，彼时匈牙利针对HAE流行病学开展了全面研究。本研究假设这一显著的趋势变化源于医疗系统内疾病认知水平的提升，但也未排除流行病学风险上升的可能性。 #### 研究主要结论 统计模型证实，匈牙利医疗系统的诊疗能力已有所提升；然而2018年前后两个时期内，均有大量晚期患者进入医疗系统。健康知识传播活动可提升公众的疾病认知、态度与行为模式，从而增强预防工作效率。匈牙利西南地区的病例数出现了无统计学显著性的增长，这或许也推动了HAE流行趋势的变化。 ### 伦理相关说明 伦理审批编号：07-03-2024/BM/2130-3/2024（由医学研究委员会科学与研究伦理委员会审批）。 参与本研究的患者需在入组前签署知情同意书。本次获批多中心研究的首席研究员巴拉日·德岑伊（Balázs Dezsényi，邮箱：[e-mail]）负责确保患者数据的伦理使用。关于研究伦理、知情同意书形式及患者数据伦理使用的相关问题，巴拉日·德岑伊可提供进一步说明。