[HTML][HTML] Novel clinical trial design and analytic methods to tackle challenges in therapeutic development in rare diseases
Y Li, R Izem - Annals of Translational Medicine, 2022 - ncbi.nlm.nih.gov
While only a fraction of the worldwide population may have a particular rare disorder,
millions of people worldwide are affected across the over 6,000 rare disorders and do not …
millions of people worldwide are affected across the over 6,000 rare disorders and do not …
Randomized and non-randomized designs for causal inference with longitudinal data in rare disorders
R Izem, R McCarter - Orphanet Journal of Rare Diseases, 2021 - Springer
Abstract In the United States, approximately 7000 rare diseases affect 30 million patients,
and only 10% of these diseases have existing therapies. Sound study design and causal …
and only 10% of these diseases have existing therapies. Sound study design and causal …
Establishing a framework for privacy-preserving record linkage among electronic health record and administrative claims databases within PCORnet®, the National …
D Kiernan, T Carton, S Toh, J Phua, M Zirkle… - BMC Research …, 2022 - Springer
Objective The aim of this study was to determine whether a secure, privacy-preserving
record linkage (PPRL) methodology can be implemented in a scalable manner for use in a …
record linkage (PPRL) methodology can be implemented in a scalable manner for use in a …
Assessing the impact of privacy-preserving record linkage on record overlap and patient demographic and clinical characteristics in PCORnet®, the National Patient …
Objective This article describes the implementation of a privacy-preserving record linkage
(PPRL) solution across PCORnet®, the National Patient-Centered Clinical Research …
(PPRL) solution across PCORnet®, the National Patient-Centered Clinical Research …
Privacy preserving record linkage for public health action: opportunities and challenges
A Pathak, L Serrer, D Zapata, R King… - Journal of the …, 2024 - academic.oup.com
Objectives To understand the landscape of privacy preserving record linkage (PPRL)
applications in public health, assess estimates of PPRL accuracy and privacy, and evaluate …
applications in public health, assess estimates of PPRL accuracy and privacy, and evaluate …
Supporting research, protecting data: one institution's approach to clinical data warehouse governance
KM Walters, A Jojic, ER Pfaff, M Rape… - Journal of the …, 2022 - academic.oup.com
Institutions must decide how to manage the use of clinical data to support research while
ensuring appropriate protections are in place. Questions about data use and sharing often …
ensuring appropriate protections are in place. Questions about data use and sharing often …
[HTML][HTML] 临床队列研究的数据标准与共享
岳和欣， 湛永乐， 边峰， 张一方， 桂路婷， 石英杰… - 中华流行病学 …, 2021 - html.rhhz.net
数据标准在临床队列研究的数据收集, 整合及共享过程中发挥着重要作用, 并逐渐受到重视.
本研究通过对5 项国际成熟的数据标准模型进行综述, 总结其特点和发展现状 …
本研究通过对5 项国际成熟的数据标准模型进行综述, 总结其特点和发展现状 …
国内外医学通用数据模型研究现状及跨队列研究模型建立模式
陈佳齐， 吕明， 王泽， 杨孝荣， 武睿婕， 张同超， 李紫琳… - 中国公共卫生, 2023 - zgggws.com
由于医疗信息资源的多来源, 多类型, 非标准等特征,“信息孤岛” 现象在医学研究中普遍存在.
中国大型队列数据来源复杂, 类型丰富, 在实现队列间数据的整合, 共享和利用时存在较大难度 …
中国大型队列数据来源复杂, 类型丰富, 在实现队列间数据的整合, 共享和利用时存在较大难度 …
[HTML][HTML] 面向FAIR 数据共享的医学通用数据模型比较研究
王安然， 吴思竹， 刘盛宇， 修晓蕾， 周佳茵， 胡拯涌… - 中华流行病学 …, 2023 - html.rhhz.net
通用数据模型(CDM) 是促进多源异构健康医疗大数据标准化整合, 增强数据语义理解一致性,
推动多方协同分析的重要工具, 经CDM 标准化后的数据集合可为开展大规模人群队列等观察性 …
推动多方协同分析的重要工具, 经CDM 标准化后的数据集合可为开展大规模人群队列等观察性 …
A governance framework to integrate longitudinal clinical and community data in a distributed data network: the childhood obesity data initiative
EM Kraus, KA Scott, R Zucker… - Journal of Public …, 2022 - journals.lww.com
Objective: A governance framework that protects individual privacy, accommodates
organizational data stewardship requirements, and complies with laws and regulations was …
organizational data stewardship requirements, and complies with laws and regulations was …