遗传性肾脏疾病临床资料数据库的建立与应用

目的建立遗传性肾脏疾病临床资料数据库,并探讨其临床应用价值。方法搜集1993-2008年北京大学第一医院儿科肾脏病房收治及医院遗传性肾脏病门诊就诊的所有疑诊遗传性肾脏疾病的患者及其家系成员,利用Access2003软件建立遗传性肾脏疾病临床资料数据库。结果共收录病例1093例。该数据库具有检索查询及简单的统计功能,而且输入输出界面友好,数据随时更新。结论利用Access2003软件建立遗传性肾脏疾病的临床资料数据库,不仅方便临床资料的信息化管理,而且为临床科学研究建立了良好的平台,为今后开展各项临床研究奠定了重要基础。     

用于临床研究的电子病历元数据策略

目的研究电子病历中对临床研究有重要作用的元数据。方法利用中国生物医学文献数据库（CBM）和Pubmed数据库收集中美有关消化系统疾病方面的回顾性研究论文。提取、分析具检索意义的临床元数据。采用Protege本体语言建立用于临床研究的电子病历核心元数据模型。结果提取出核心元数据包括诊断信息、手术信息、检查信息、问题列表、用药列表、基线信息及其子元素。结论核心元数据中的元素都是在临床回顾性研究中具有检索意义的重要元素。     

胃癌数据库系统的构建

目的：设计并构建胃癌数据库系统。方法：采用Microsoft SQL Sever数据库管理系统构建数据库。利用VB进行编程,完成数据库应用程序设计。结果：完成了数据库、应用程序及相应的自定义查询工具的设计和构建。数据库功能模块包括录入、查询、系统管理、输出、用户和帮助。结论：胃癌数据库管理系统具有独立、清晰和升级快等优点,为临床研究提供了完整准确的原始数据记录,可投入临床使用。     

一种新型妊娠期疾病病历管理系统的设计

目的:详细介绍妊娠期疾病病历管理系统的特点和整体设计,从妇产科专业角度对病历的编辑和使用进行规范化、标准化、智能化设计。方法:在病历数据库中灵活的进行数据的存储和访问,特别是病历统计管理理念的引入,利用过滤条件的设置可方便的对病历库进行检索,使符合条件的病历从数据库中导出。结果:该系统在北京妇产医院试用2年,节省了医生填写和访问病例的时间,为科研工作提供了大量的病例信息。结论:本文病历库的数据格式可以与SPSS统计软件无缝连接,为临床科研提供客观、严谨的数据支持。     

利用电子病历数据开展临床研究的文献分析

目的总结利用电子病历数据开展临床研究的趋势及其常用的研究方法。方法对从PubMed和中国知网数据库中筛选出的2014年到2018年间发表的132篇国内外基于电子病历数据的临床研究文献,进行分析总结。结果利用电子病历数据能广泛研究各种疾病,国内外学者均较多地关注疾病的综合特征,以及心血管系统等疾病中常见的慢性病。最常用的研究方法为横断面研究,其次为队列研究和病例对照研究。结论目前电子病历研究发展较为迅速,但国内发展速度明显慢于国外。真实世界研究应该是今后研究的热点。     

临床组织样本库病例随访平台的系统构建与应用

目的 构建信息化病例随访平台,为临床研究及生物学研究提供完善的随访数据.方法 随访平台基于数据库挖掘技术、网络技术及医院信息系统,为患者随访提供了新的管理思路.系统应用数据库管理技术和NET编程技术框架进行开发设计,采用浏览器/服务器架构模式,以SQL Server 2005为数据库管理平台.结果 自2008年12月～2010年10月,随访患者3 259例,共6 573次随访记录,丰富了组织样本的临床数据,实现了基础与临床更好的结合.结论 应用病例随访平台能更方便地进行数据录入保存及导出管理,是医院或临床组织样本库数据管理的新模式.     

一种基于患者空间目标搜索定位算法的描述与实现

目的在地理信息系统中准确地标识患者所在的地理位置,为流行疾病的控制和预防提供病例的空间分析。方法使用数据库二维表结构来分析数据,寻求地名字符串与地理信息系统数据库中数据项字符串的最大匹配。结果本算法解决了在地理信息数据库中存在大量冗余记录的情况下,如何有效地实现指定地理目标的搜索定位问题。结论准确标识患者的地理位置,为流行疾病的控制和预防提供了有力的决策依据和手段。     

多中心重大出生缺陷数据共享科研大数据平台构建及应用

目的 通过采集跨机构、跨区域的临床数据、生物数据、基因数据及疾病知识数据等高质量重大出生缺陷数据,建设多中心数据共享的重大出生缺陷科研大数据平台,为构建尚未形成的多中心、跨区域、可共享的国家级重大出生缺陷数据库奠定基础。方法 运用融合计算、数据仓库、人工智能、云平台、大数据等技术方法,辅助平台建设和研发,支撑重大出生缺陷的辅助诊断。结果 该平台可提供数据采集、质量控制、临床表型与基因数据的可视化分析、人工智能临床辅助决策等服务,通过汇聚数据形成了覆盖全生命周期的19个出生缺陷单病种数据库,实现了5个病种的人工智能辅助诊断应用。结论 通过该平台实现了重大出生缺陷数据全生命周期的闭环管理,为实现个性化、精准化的临床科学研究和疾病治疗提供了数据资源和技术支撑,对推进全生命周期的出生缺陷防治体系建设具有重要作用。     

乳腺癌数据库软件的临床应用

目的设计一种用于乳腺癌临床资料收集、查询、统计的数据库,介绍其临床应用。方法利用Visualstudio.NET和Microsoft Access数据库等专业工具设计数据库。将2008年1月-2009年1月中南大学湘雅三医院普外二科收治的146例初发乳腺癌患者的临床资料输入数据库,进行使用测试。结果成功建立了乳腺癌临床资料收集、查询、统计系统,具有输入数据快速、完整、可靠,数据查询、统计快速准确,数据维护安全可靠的特点,可对病案实行信息化管理。结论乳腺癌临床应用数据库,为乳腺癌患者的临床资料信息化管理提供了一种有用的工具。     

半夏泻心汤实验相关研究进展

半夏泻心汤组方精炼、配伍独特，具有苦降、甘补、辛开的配伍特点。现代医疗潜心致力于半夏泻心汤的发展研究并在临床上广泛应用，其配方具有抑菌、消炎等作用，可以促进蛋白和相关激素的分泌、加速胃肠局部组织修复、生长表达，进而提高身体免疫力。在临床治疗中，对于消化不良、胃炎、肠炎等导致脾胃寒热交错、升降失常的患者，通常使用半夏泻心汤治疗。但是，对于半夏泻心汤在现代医疗临床使用中仍然存在一定的问题，需要后续研究人员深入探究。半夏泻心汤由于临床研究样本少，设计的治疗方案缺乏科学性和严谨性，且实验样本缺少临床数据的验证和考量；半夏泻心汤多数以消化系统疾病为研究背景，缺少其他系统疾病的研究；其临床研究结果很多都止步于病理环节上，对较深层次的作用机理研究缺乏系统探讨。相关研究表示，加大临床研究质量、规模和随机性，利用多途径、多手段、多层次的研究本方，并结合现代医疗是今后科研人员的研究方向。本文对半夏泻心汤实验相关研究进展进行综述，以期为日后治疗疾病提供更多现代药理研究和理论依据。     

Bibliographic information retrieval in the field of artificial nutrition

The enormous amount of data available for clinical and research purposes has made information searching a complex task. We have designed a study to determine which bibliographic databases provide appropriate information for the field of artificial nutrition. Of the 149 databases consulted in the preliminary search, 15 were found to contain an appreciable number of titles related to our field. As a general result, we found that MEDLINE had the largest number of titles but other databases oriented toward more specific topics contained references that were unique to them. The results show that an exhaustive search for any topic concerning artificial nutrition must be done on MEDLINE, EMBASE and Current Contents (75% productivity). These can be complemented with others according to their specialization in the subject to be treated. To obtain productivity over 75%, from five to seven databases must be consulted, according to the item under study.     

Meta-analyses Using Individual Participant Data From Cardiovascular Cohort Studies in Japan: Current Status and Future Directions

Meta-analysis of individual participant data (IPD meta-analysis) has several advantages over meta-analysis using aggregated published data, including the possibility of using statistical methods such as a fine stratification analysis, interaction analysis between 2 risk factors, and absolute risk estimation. The Evidence for Cardiovascular Prevention from Observational Cohorts in Japan Study (EPOCH-JAPAN), which was initiated in 2005, is a collaborative research project for IPD meta-analysis and includes 13 participating cohort studies in Japan. We generated 2 pooled databases with data on all-cause mortality (n = 199 047) and cardiovascular outcomes (n = 90 528) and applied a stratified Cox model to account for the different baseline hazards between cohorts. The results of our analyses show the age- and sex-specific associations between all-cause and cardiovascular disease mortality and established cardiovascular risk factors (blood pressure, smoking, total cholesterol, proteinuria, and kidney function). During the 9 years of its existence, the results generated by EPOCH-JAPAN have had important implications for clinical medicine and public health policy in Japan. The project is expected to draw upon new analytical methods such as interaction analysis and absolute risk evaluation in the near future. We believe that, over the next decade, this project will continue to provide new insights that can be applied to research on other Asian populations.Key words: meta-analysis, individual participant data, premature death, cardiovascular disease, population attributable fraction     

Co-morbidity data in outcomes research: are clinical data derived from administrative databases a reliable alternative to chart review?

Evaluation of co-morbidity data is essential in health outcomes research. Co-morbidity data derived from administrative databases has been criticized for lacking the accuracy required for clinical research. We compared co-morbidity data derived from a Canadian provincial hospitalization database with chart review in 817 adults treated with a percutaneous coronary intervention at a single tertiary care hospital between 1994 and 1995. While the administrative database tended to under-estimate the prevalence of some co-morbid conditions, the agreement between chart review and administrative data was good to very good for most conditions. Asymptomatic conditions were noted to have lower levels of agreement. Multivariate risk models for all-cause mortality constructed from both data sources were almost identical, suggesting minimal misclassification. The results indicate that clinical data abstracted from most Canadian hospitalization databases can provide reliable information regarding baseline co-morbid conditions believed to influence survival in a population undergoing percutaneous coronary interventions.     

Improving the Use of Data Sources in Disease Management Programs

Disease management has become an increasingly popular tool used to manage people with chronic diseases in managed care organizations. The implementation of these programs, coupled with pressures to document quality and control costs, has increased the need for information regarding the health services provided to patients. This paper gives an overview of selected topics involved in data collection, including medical record review, databases, automated systems, and disease management software. The preliminary uses of the Internet and wireless technology are also discussed.Efficient data collection requires the identification of pertinent information from clinical, patient-reported, and economic data. Several sources provide this. The medical record is considered the gold standard for providing clinical information. However, collecting this data can be time consuming and expensive. Claims that databases have gained popularity for their comprehensiveness and accessibility are eroded by the lack of detailed clinical information. Direct communication with patients via telephone is commonly used in disease management programs, but its effectiveness as a data collection tool is not well documented. The use of the Internet and wireless technology in data collection is an exciting opportunity, since it provides interactive access between providers, patients, and the managed care organization.In most cases, a combination of data sources will be required to collect all the necessary information. However, claims databases, medical chart review, and telephone interviews are the backbone of data collection in disease management. The computerization of medical information systems, and use of the Internet and wireless technologies, should facilitate future data collection.     

Risk adjustment for coronary artery bypass graft surgery: an administrative approach versus EuroSCORE.

OBJECTIVE: To determine the ability of administrative data in predicting in-hospital mortality for patients undergoing coronary artery bypass graft surgery. METHODS: Patient data were obtained from the administrative databases on hospital discharge abstracts of the Italian region Emilia Romagna for the years 2000-2001. We used a multivariate logistic regression analysis to compare an ICD-9-CM risk adjustment approach based on administrative variables (such as age, gender, principal diagnosis, combined operation, previous cardiac surgery, emergency admission, and Charlson comorbidity index) with a risk adjustment approach based on the clinical European System for Cardiac Operative Risk Evaluation (EuroSCORE) to predict in-hospital mortality and to assess hospital performance. In order to distinguish complications of care from comorbidities, we linked hospital data across multiple episodes of care up to 1 year before the admission for coronary artery bypass graft (CABG). RESULTS: The risk adjustment approach based on ICD-9-CM data provides good explanatory ability in models assessing in-hospital mortality (the c statistics obtained are very close: c = 0.76 in 2000 and c = 0.80 in 2001 for the administrative model versus 0.78 in 2000 and 0.77 in 2001 for the clinical one) and in those ranking the centres (c = 0.78 in 2000 in both approaches, and c = 0.82 for the administrative model versus c = 0.78 for the clinical one in 2001). CONCLUSIONS: Adding some administrative variables considered proxy for clinical complexity to the administrative model and linking hospital data across patients' multiple episodes of care eliminated much of the difference in effectiveness between the clinical and administrative risk adjustment approach. Focusing on the health policy context of measuring CABG death rates, our study strengthened the thesis that, with the growing improvement in accurate coding practice, administrative databases could provide a valuable and economical source for health planning and research.     

Childhood cancer from the point of view the sick children's siblings: bibliographic review

The study aims at carrying out a bibliographic review of research on topics related to siblings of children with cancer; from 1998 to 2003, in order to identify the knowledge available in the field and provide subsidies for nursing care for siblings of children with cancer. We used the following databases: MEDLINE, LILACS, CINAHL, and PsycINFO. We also used full online articles, through the publishing house OVID, with the following keyword combinations: cancer and siblings; cancer, child and siblings; cancer, adolescent and siblings. The analysis of publications allowed the identification of four topics: the impact of the disease on healthy siblings; the significance of the disease for the healthy sibling; social support and care and intervention needs. The data indicated that research focusing on siblings of children with cancer has been growing, especially in the fields of nursing and psychology. They also show the concern with transforming clinical practice in order to effectively intervene in the care provided to the siblings' psychosocial needs.     

恩度治疗非小细胞肺癌的快速卫生技术评估

目的利用快速卫生技术评估工具对恩度治疗非小细胞肺癌(non-small cell lung cancer,NSCLC)进行有效性、安全性、经济性评估,为临床药物选择提供循证证据。方法通过计算机检索PubMed、the Cochrane Library、Embase等英文数据库和中国知网(CNKI)、万方和CBM等中文数据库,2名评价者独立提取数据结果。仅纳入恩度治疗NSCLC的系统评价、Meta分析、卫生技术评估和药物经济学研究,同时采用描述性分析对研究结论进行分类汇总。结果共纳入9篇文献,8篇为系统评价,1篇为药物经济学研究。与标准化疗方案比较,恩度联合化疗方案可提高NSCLC患者的有效率、疾病控制率和临床收益率。安全性研究结果显示,两组方案不良反应发生率的无统计学差异。药物经济学研究显示联合化疗方案可提高NSCLC患者的质量生命调整年,但成本效果不优于标准化疗方案。结论恩度联合化疗方案治疗NSCLC具有良好的有效性和安全性,在我国当前恩度成本效益不佳,但在人均GDP较高地区,恩度可能具有良好的经济性。     

Secondary use of personal data for health and health services research: why identifiable data are essential

Databases provide a powerful and essential resource for health and health services research. There are seven reasons why the identification of individuals may be needed: linkage within a database; linkage between databases; ensuring comparisons are meaningful; ensuring completeness of recruitment; investigation of social factors; analysis of trends over time; and assessing the applicability of primary research findings. Examples of recent British research studies for which identifiable data were essential are described to illustrate six research applications: to understand the natural history and development of disease; to identify causes of disease; to evaluate health care interventions; to assess equity of care; to describe trends in health care utilisation; and to ensure the methodological rigour of research. Given the benefits to the public of such research activities, methods need to be found to ensure the continuation of such research while meeting legitimate concerns about individual privacy and confidentiality.