Palmieri Luigi, Veronesi Giovanni, Corrao Giovanni, Traversa Giuseppe, Ferrario Marco M, Nicoletti Giovanni, Di Lonardo Anna, Donfrancesco Chiara, Carle Flavia, Giampaoli Simona
1Department of Cardiovascular, Dysmetabolic and Aging-associated Diseases, Istituto Superiore di Sanità (ISS), Via Giano della Bella, 34 00162 Rome, Italy.
2Research Centre in Epidemiology and Preventive Medicine, Università dell'Insubria, Varese, Italy.
Arch Public Health. 2018 Jun 28;76:31. doi: 10.1186/s13690-018-0283-3. eCollection 2018.
Population-based registries implement the comprehensive collection of all disease events that occur in a well-characterized population within a certain time period and represent the preferred tools for disease monitoring at a population level. Main characteristics of a Population-based registry are to provide answers to defined research questions, also related to clinical and health policy purposes, assuring completeness of event identification, and implementing a process of case adjudication (validation) according to standardised diagnostic criteria.
The application of a standard methodology results in the availability of reliable and comparable data and facilitates the transferability of health information for research and evidence-based health policies. Although registries are extremely useful, they require considerable resources to be implemented and maintained, high cost and efforts, to produce stable and reliable indicators.
Thanks to available health information and information technology, current administrative databases on hospital admissions and discharges, medication use, in-patient care utilization, surgical operations, drug dispensations, ticket exemption and invasive procedures are increasingly available. They represent basic sources of information for implementing Population-based registries.Main strengths and limitations of Population-based registries are described taking into consideration the example of cardiovascular diseases, as well as future challenges and opportunities for implementing Population-based registries at European level.
The integration of population-based registries and current administrative health databases may help to complete the picture of the disease rebuilding the evolution of the disease as a continuum from the onset to the possible consequent complications.
基于人群的登记系统对特定时间段内特征明确的人群中发生的所有疾病事件进行全面收集，是在人群层面进行疾病监测的首选工具。基于人群的登记系统的主要特点是能够回答既定的研究问题，这些问题也与临床和卫生政策目的相关，确保事件识别的完整性，并根据标准化诊断标准实施病例判定（验证）过程。
应用标准方法可获得可靠且可比的数据，并有助于卫生信息在研究和循证卫生政策方面的可转移性。尽管登记系统非常有用，但实施和维护它们需要大量资源，成本高昂且费力，以生成稳定可靠的指标。
由于现有卫生信息和信息技术，目前关于医院入院和出院、用药、住院护理利用、外科手术、药物配给、免票和侵入性操作的行政数据库越来越多。它们是实施基于人群的登记系统的基本信息来源。以心血管疾病为例，阐述了基于人群的登记系统的主要优势和局限性，以及在欧洲层面实施基于人群的登记系统面临的未来挑战和机遇。
将基于人群的登记系统与当前的行政卫生数据库相结合，可能有助于完善疾病情况，将疾病从发病到可能随之而来的并发症的演变重建为一个连续过程。
