title: Standardized data sharing in a paediatric oncology research network--a proof-of-concept study.
abstract: Data that has been collected in the course of clinical trials are potentially valuable for additional scientific research questions in so called secondary use scenarios. This is of particular importance in rare disease areas like paediatric oncology. If data from several research projects need to be connected, so called Core Datasets can be used to define which information needs to be extracted from every involved source system. In this work, the utility of the Clinical Data Interchange Standards Consortium (CDISC) Operational Data Model (ODM) as a format for Core Datasets was evaluated and a web tool was developed which received Source ODM XML files and--via Extensible Stylesheet Language Transformation (XSLT)--generated standardized Core Dataset ODM XML files. Using this tool, data from different source systems were extracted and pooled for joined analysis in a proof-of-concept study, facilitating both, basic syntactic and semantic interoperability.
authors.affiliation: AIT Austrian Institute of Technology, Austria.
authors.forename: Nina
authors.initials: N
authors.lastname: Hochedlinger
authors.affiliation: AIT Austrian Institute of Technology, Austria.
authors.forename: Michael
authors.initials: M
authors.lastname: Nitzlnader
authors.affiliation: AIT Austrian Institute of Technology, Austria.
authors.forename: Markus
authors.initials: M
authors.lastname: Falgenhauer
authors.affiliation: AIT Austrian Institute of Technology, Austria.
authors.forename: Stefan
authors.initials: S
authors.lastname: Welte
authors.affiliation: AIT Austrian Institute of Technology, Austria.
authors.forename: Dieter
authors.initials: D
authors.lastname: Hayn
authors.affiliation: FORTH Institute of Computer Science, Greece.
authors.forename: Lefteris
authors.initials: L
authors.lastname: Koumakis
authors.affiliation: FORTH Institute of Computer Science, Greece.
authors.forename: George
authors.initials: G
authors.lastname: Potamias
authors.affiliation: FORTH Institute of Computer Science, Greece.
authors.forename: Manolis
authors.initials: M
authors.lastname: Tsiknakis
authors.affiliation: Cineca InterUniversity Consortium, Italy.
authors.forename: Davide
authors.initials: D
authors.lastname: Saraceno
authors.affiliation: Cineca InterUniversity Consortium, Italy.
authors.forename: Eugenia
authors.initials: E
authors.lastname: Rinaldi
authors.affiliation: CCRI, Children's Cancer Research Institute, Austria.
authors.forename: Ruth
authors.initials: R
authors.lastname: Ladenstein
authors.affiliation: AIT Austrian Institute of Technology, Austria.
authors.forename: Günter
authors.initials: G
authors.lastname: Schreier
mesh_terms: D057286:Electronic Health Records / Q000458:organization & administration*; D005060:Europe; D006302:Health Services Research / Q000458:organization & administration*; D016247:Information Storage and Retrieval / Q000592:standards*; D008495:Medical Oncology / Q000458:organization & administration*; D008498:Medical Record Linkage / Q000379:methods / Q000592:standards*; D009323:Natural Language Processing; D010372:Pediatrics / Q000458:organization & administration*; D010865:Pilot Projects; D017410:Practice Guidelines as Topic; D018875:Vocabulary, Controlled