信息系统建设支持小儿哮喘专病临床研究

Information System Construction to Support Clinical Research on Pediatric Asthma

目的:设计并研发一种适用于小儿哮喘临床随访的专病库系统,使临床专科医师能在信息系统的辅助和支持下,开展高质量的专病研究。方法:通过专科医师、信息管理部门协同研发一个系统,包括定义小儿哮喘专病数据采集表、规范纳入和排除标准、建立入组流程、升级门诊医生工作站、搭建医患交互平台,将多来源数据整合形成临床科研一体化的专病库系统。结果:该小儿哮喘专病库系统建设了一个能将患儿首诊、复诊及随访数据进行整合,实现多维数据高效采集并良好整合和呈现的系统,在哮喘专病门诊为小儿哮喘队列研究的患者自动入组、数据自动采集、长期随访管理等多种功能提供了信息化支持。结论:信息化专病库系统在临床上为高效开展专病队列患者入组和随访提供了技术支持,为专病数据采集和管理提供了解决方案,有效提升了专病队列研究的效率。

Objective:To introduce the design and development of a particular disease registry database system for pediatric patients with asthma.This system can help pediatricians to carry out high-quality clinical cohort studies.Methods:Hospital information management departments developed and implemented this registry system in the framework of cooperation with Pediatric physicians.The design steps include the definition of the electronic case report form(eCRF)for pediatric asthma,deciding the inclusion and exclusion criteria,establishing an enrollment procedure,upgrading outpatient doctor workstations,setting a doctorpatient interaction platform,and integration of multi-source data.Results:The program built a registry system that can integrate the data for the whole cohort,including the first consultation and follow-up period.The system integrated multi-dimensional data to provide strong support for clinical investigators in the care and study of children with asthma.Conclusion:The asthma registry supported the asthma cohort studied in enrollment,accessible data collection and integration.We provided a solution for particular disease database implementation which improved the efficiency of clinical cohort studies.