title: Key Data Elements in Myeloid Leukemia.
abstract: Data standards consisting of key data elements for clinical routine and trial documentation harmonize documentation within and across different health care institutions making documentation more efficient and improving scientific data analysis. This work focusses on the field of myeloid leukemia (ML), where a semantic core of common data elements (CDEs) in routine and trial documentation is established by automatic UMLS-based form analysis of existing documentation models. These CDEs (n = 227) were initially reviewed and commented by leukemia experts before they were systematically surveyed by an international voting process through seven hematologists of four countries. The total agreement score was 86%. 116 elements (51%) of these share an agreement score of 100%. This work generated CDEs with language-independent semantic codes and international clinical expert review to build a first approach towards an international data standard for ML. A first version of the CDE list is implemented in the data standard Operational Data Model and additional other data formats for reuse in different medical information systems.
authors: Institute of Medical Informatics, University of Muenster, Germany.
authors: Julian
authors: J
authors: Varghese
authors: Institute of Medical Informatics, University of Muenster, Germany.
authors: Christian
authors: C
authors: Holz
authors: Institute of Medical Informatics, University of Muenster, Germany.
authors: Phillip
authors: P
authors: Neuhaus
authors: Hematology and BMT Unit, San Raffaele Scientific Institute, Italy.
authors: Massimo
authors: M
authors: Bernardi
authors: Department of Hematology, Elisabethinen Hospital Linz, Austria.
authors: Alexandra
authors: A
authors: Boehm
authors: Department of Hematology, Hannover Medical School, Germany.
authors: Arnold
authors: A
authors: Ganser
authors: Department of Internal Medicine, Yale Cancer Center, New Haven, CT, USA.
authors: Steven
authors: S
authors: Gore
authors: Department of Hematology, Columbia University Medical Center, USA.
authors: Mark
authors: M
authors: Heaney
authors: Department of Internal Medicine, University Hospital Jena, Germany.
authors: Andreas
authors: A
authors: Hochhaus
authors: Department of Hematology and Oncology, University Medical Centre Mannheim, Germany.
authors: Wolf-Karsten
authors: WK
authors: Hofmann
authors: Department of Hematology and Oncology, Klinikum Leverkusen, Germany.
authors: Utz
authors: U
authors: Krug
authors: Department of Hematology and Oncology, University Hospital Halle, Germany.
authors: Carsten
authors: C
authors: Müller-Tidow
authors: ECSG, Department of Health Sciences, University of York, UK.
authors: Alexandra
authors: A
authors: Smith
authors: Department of Hematology, Elisabethinen Hospital Linz, Austria.
authors: Ansgar
authors: A
authors: Weltermann
authors: Radboud University Medical Centre, Nijmegen, Netherlands.
authors: Theo
authors: T
authors: de Witte
authors: Department of Hematology and Oncology, University of Heidelberg, Mannheim, Germany.
authors: Rüdiger
authors: R
authors: Hehlmann
authors: Institute of Medical Informatics, University of Muenster, Germany.
authors: Martin
authors: M
authors: Dugas
mesh_terms: D002986:Clinical Trials as Topic; D003625:Data Collection; D004282:Documentation / Q000592:standards*; D006801:Humans; D007951:Leukemia, Myeloid; D012660:Semantics