Multi-site EMR data ingest through FHIR: A case study for the RDCRN

通过 FHIR 摄取多站点 EMR 数据：RDCRN 案例研究

• 批准号: 10677168
• 负责人: Eileen Catherine King
• 金额: $ 83.5万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-16 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10677168
• 关键词: Administrative Supplement; Case Study; Child; Clinical Research; Computer software; Computerized Medical Record; Data; Data Element; Databases; Environment; FAIR principles; Fast Healthcare Interoperability Resources; Goals; Infrastructure; Ingestion; Medical Records; Mission; Natural History; Performance; Quality Control; Rare Diseases; Research; Research Personnel; Site; Structure; System; Testing; Work; base; cost; data acquisition; data ingestion; data interoperability; data management; data quality; data repository; data sharing; data standards; design; tool

Project Summary This administrative supplement to the Data Management and Coordinating Center (DMCC) of the Rare Diseases Clinical Research Network (RDCRN) proposes to design, implement and test new software to enable the ingestion and quality control of multi-site Electronic Medical Records (EMR) data into natural history study databases. The proposed technical solution is based on Fast Healthcare Interoperability Resources (FHIR) interfaces to EMR systems as well as the REDCap database infrastructure already operating in the RDCRN DMCC’s cloud environment. Over the one year performance period we will engage with the CEGIR consortium and the EMR teams at Cincinnati Children’s and at least one additional site to demonstrate feasibility of our proposed approach, with the long-term goal of enabling EMR data flow into natural history research databases for all RDCRN consortia. Other potential long-term implications include potentially significantly lower cost of data acquisition, increased standardization of data elements for RDCRN studies and increased availability of FAIR (findable, accessible, interoperable and reusable) data in the RDCRN’s long-term Data Repository. The work proposed here is a natural extension of the DMCC’s mission to provide data acquisition, storage and analysis tools for rare disease researchers.

项目摘要 本行政补充的数据管理和协调中心（DMCC）的罕见的 疾病临床研究网络（RDCRN）建议设计，实施和测试新软件， 使多站点电子病历（EMR）数据的摄取和质量控制成为自然 历史研究数据库。建议的技术解决方案基于快速医疗保健互操作性 资源（FHIR）接口到EMR系统以及REDCap数据库基础设施已经 在RDCRN DMCC的云环境中运行。在一年的业绩期间，我们将从事 与CEGIR联盟和辛辛那提儿童医院的EMR团队以及至少一个额外的研究中心合作， 证明了我们提出的方法的可行性，长期目标是使EMR数据流入 所有RDCRN财团的自然历史研究数据库。其他潜在的长期影响包括 潜在地显著降低数据采集成本，提高RDCRN数据元素的标准化 研究和增加可供使用的FAIR（可查找、可访问、可互操作和可重复使用）数据， RDCRN的长期数据存储库。 这里提出的工作是DMCC的使命的自然延伸，提供数据采集、存储 和分析工具。

项目成果

Assessing the association of common genetic variants in EPHB4 and RASA1 with phenotype severity in familial cerebral cavernous malformation.

• DOI: 10.1002/mgg3.1794
• 发表时间: 2021-10
• 期刊: Molecular genetics & genomic medicine
• 影响因子: 2
• 作者: Choksi F;Weinsheimer S;Nelson J;Pawlikowska L;Fox CK;Zafar A;Mabray MC;Zabramski J;Akers A;Hart BL;Morrison L;McCulloch CE;Kim H
• 通讯作者: Kim H

In situ mapping identifies distinct vascular niches for myelopoiesis.

• DOI: 10.1038/s41586-021-03201-2
• 发表时间: 2021-03
• 期刊: Nature
• 影响因子: 64.8
• 作者: Zhang J;Wu Q;Johnson CB;Pham G;Kinder JM;Olsson A;Slaughter A;May M;Weinhaus B;D'Alessandro A;Engel JD;Jiang JX;Kofron JM;Huang LF;Prasath VBS;Way SS;Salomonis N;Grimes HL;Lucas D
• 通讯作者: Lucas D

Immunological response after SARS-CoV-2 infection and mRNA vaccines in patients with myasthenia gravis treated with Rituximab.

• DOI: 10.1016/j.nmd.2023.02.005
• 发表时间: 2023-03
• 期刊: NEUROMUSCULAR DISORDERS
• 影响因子: 2.8
• 作者: Damato, Valentina;Spagni, Gregorio;Monte, Gabriele;Scandiffio, Letizia;Cavalcante, Paola;Zampetti, Nicole;Fossati, Marco;Falso, Silvia;Mantegazza, Renato;Battaglia, Alessandra;Fattorossi, Andrea;Evoli, Amelia
• 通讯作者: Evoli, Amelia

Genotype-Phenotype Correlations in Children with HHT.

• DOI: 10.3390/jcm9092714
• 发表时间: 2020-08-22
• 期刊: Journal of clinical medicine
• 影响因子: 3.9
• 作者: Kilian A;Latino GA;White AJ;Clark D;Chakinala MM;Ratjen F;McDonald J;Whitehead K;Gossage JR;Lin D;Henderson K;Pollak J;McWilliams JP;Kim H;Lawton MT;Faughnan ME;the Brain Vascular Malformation Consortium HHT Investigator Group
• 通讯作者: the Brain Vascular Malformation Consortium HHT Investigator Group

Strong correlation of ferrochelatase enzymatic activity with Mitoferrin-1 mRNA in lymphoblasts of patients with protoporphyria.

原卟啉症患者淋巴母细胞中亚铁螯合酶活性与线粒体铁蛋白-1 mRNA 强相关。

• DOI: 10.1016/j.ymgme.2018.10.005
• 发表时间: 2019
• 期刊: Molecular genetics and metabolism
• 影响因子: 3.8
• 作者: Phillips,John;Farrell,Collin;Wang,Yongming;Singal,AshwaniK;Anderson,Karl;Balwani,Manisha;Bissell,Montgomery;Bonkovsky,Herbert;Seay,Toni;Paw,Barry;Desnick,Robert;Bloomer,Joseph
• 通讯作者: Bloomer,Joseph