Integrated Image Data and Medical Record Management for Rare Disease Registries. A General Framework and its Instantiation to the German Calciphylaxis Registry.
Especially for investigator-initiated research at universities and academic institutions, Internet-based rare disease registries (RDR) are required that integrate electronic data capture (EDC) with automatic image analysis or manual image annotation. We propose a modular framework merging alpha-nume...
| Publicado en: | Journal of Digital Imaging Vol. 27; no. 6; pp. 702 - 714 |
|---|---|
| Autores principales: | , , , , , |
| Formato: | pictorial tables/charts Journal Article |
| Publicado: |
Springer Nature
Dec2014
|
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=103912423&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 103912423 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 08971889 DOQ jtl: Journal of Digital Imaging issn: 08971889 maglogo: N pubinfo: dt: Dec2014 vid: 27 iid: 6 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 103912423 99255673 10.1007/s10278-014-9698-8 NLM24865858 103912423 ppf: 702 ppct: 12 formats: fmt: @attributes: type: P tig: atl: Integrated Image Data and Medical Record Management for Rare Disease Registries. A General Framework and its Instantiation to the German Calciphylaxis Registry. aug: au: Deserno, Thomas Haak, Daniel Brandenburg, Vincent Deserno, Verena Classen, Christoph Specht, Paula affil: Department of Medical Informatics, Uniklinik RWTH Aachen, Pauwelsstr. 30 52057 Aachen Germany sug: subj: Data Management Registries, Disease Standards Digital Imaging Administration Systems Integration Image Processing, Computer Assisted Germany Systems Analysis Systems Design Graphical User Interface ab: Especially for investigator-initiated research at universities and academic institutions, Internet-based rare disease registries (RDR) are required that integrate electronic data capture (EDC) with automatic image analysis or manual image annotation. We propose a modular framework merging alpha-numerical and binary data capture. In concordance with the Office of Rare Diseases Research recommendations, a requirement analysis was performed based on several RDR databases currently hosted at Uniklinik RWTH Aachen, Germany. With respect to the study management tool that is already successfully operating at the Clinical Trial Center Aachen, the Google Web Toolkit was chosen with Hibernate and Gilead connecting a MySQL database management system. Image and signal data integration and processing is supported by Apache Commons FileUpload-Library and ImageJ-based Java code, respectively. As a proof of concept, the framework is instantiated to the German Calciphylaxis Registry. The framework is composed of five mandatory core modules: (1) Data Core, (2) EDC, (3) Access Control, (4) Audit Trail, and (5) Terminology as well as six optional modules: (6) Binary Large Object (BLOB), (7) BLOB Analysis, (8) Standard Operation Procedure, (9) Communication, (10) Pseudonymization, and (11) Biorepository. Modules 1-7 are implemented in the German Calciphylaxis Registry. The proposed RDR framework is easily instantiated and directly integrates image management and analysis. As open source software, it may assist improved data collection and analysis of rare diseases in near future. pubtype: Academic Journal doctype: pictorial tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
|---|