Integrated image data and medical record management for rare disease registries. A general framework and its instantiation to theGerman Calciphylaxis Registry
| Autor: | Verena Deserno, Christoph Classen, Vincent Brandenburg, Daniel Haak, Thomas Martin Deserno, Paula Specht |
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| Rok vydání: | 2014 |
| Předmět: |
Electronic data capture
Databases Factual Medical Records Systems Computerized Computer science Data management Binary large object computer.software_genre Article Rare Diseases Germany Humans Radiology Nuclear Medicine and imaging Registries Pseudonymization Internet Radiological and Ultrasound Technology Database business.industry Calciphylaxis Computer Science Applications Automatic image annotation Audit trail Database Management Systems The Internet business computer Data integration |
| Zdroj: | Journal of digital imaging. 27(6) |
| ISSN: | 1618-727X |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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