{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T03:11:41Z","timestamp":1782443501110,"version":"3.54.5"},"reference-count":61,"publisher":"Public Library of Science (PLoS)","issue":"10","license":[{"start":{"date-parts":[[2019,10,15]],"date-time":"2019-10-15T00:00:00Z","timestamp":1571097600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"DOI":"10.1371\/journal.pone.0223886","type":"journal-article","created":{"date-parts":[[2019,10,15]],"date-time":"2019-10-15T20:43:31Z","timestamp":1571172211000},"page":"e0223886","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":10,"title":["EMR-integrated minimal core dataset for routine health care and multiple research settings: A case study for neuroinflammatory demyelinating diseases"],"prefix":"10.1371","volume":"14","author":[{"given":"Sophia","family":"von Martial","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1557-8097","authenticated-orcid":true,"given":"Tobias J.","family":"Brix","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luisa","family":"Klotz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philipp","family":"Neuhaus","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Klaus","family":"Berger","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clemens","family":"Warnke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sven G.","family":"Meuth","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heinz","family":"Wiendl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9740-0788","authenticated-orcid":true,"given":"Martin","family":"Dugas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2019,10,15]]},"reference":[{"issue":"12","key":"pone.0223886.ref001","article-title":"Dokumentation in der Medizin: Es ist ein Wahnsinn! [Documentation in medicine\u2014it is a madness!]","volume":"106","author":"SD Costa","year":"2009","journal-title":"Deutsches \u00c4rzteblatt"},{"key":"pone.0223886.ref002","doi-asserted-by":"crossref","first-page":"86","DOI":"10.1016\/j.jbi.2014.04.008","article-title":"The need for harmonized structured documentation and chances of secondary use\u2014results of a systematic analysis with automated form comparison for prostate and breast cancer","volume":"51","author":"R Krumm","year":"2014","journal-title":"Journal of biomedical informatics"},{"issue":"5","key":"pone.0223886.ref003","doi-asserted-by":"crossref","first-page":"454","DOI":"10.1056\/NEJMra1510059","article-title":"Pragmatic Trials","volume":"375","author":"I Ford","year":"2016","journal-title":"New England Journal of Medicine"},{"issue":"38","key":"pone.0223886.ref004","first-page":"635","article-title":"The Range and Scientific Value of Randomized Trials","volume":"114","author":"S Lange","year":"2017","journal-title":"Deutsches Arzteblatt international"},{"issue":"12","key":"pone.0223886.ref005","doi-asserted-by":"crossref","first-page":"915","DOI":"10.1016\/j.ijmedinf.2014.08.007","article-title":"Does single-source create an added value? Evaluating the impact of introducing x4T into the clinical routine on workflow modifications, data quality and cost-benefit","volume":"83","author":"P Bruland","year":"2014","journal-title":"International journal of medical informatics"},{"issue":"3","key":"pone.0223886.ref006","doi-asserted-by":"crossref","first-page":"322","DOI":"10.1177\/1740774512438980","article-title":"National Institute of Neurological Disorders and Stroke Common Data Element Project\u2014approach and methods","volume":"9","author":"ST Grinnon","year":"2012","journal-title":"Clinical trials (London, England)"},{"key":"pone.0223886.ref007","unstructured":"CDISC\u2014Clinical Data Interchange Standards Consortium. Specification for the Operational Data Model (ODM): Version 1.3.2; 2013. Available from: http:\/\/www.cdisc.org\/odm."},{"key":"pone.0223886.ref008","unstructured":"U S National Library of Medicine. NIH Common Data Elements (CDE) Repository; 2018. Available from: https:\/\/cde.nlm.nih.gov\/home."},{"issue":"1","key":"pone.0223886.ref009","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1038\/sc.2010.90","article-title":"Incorporation of the International Spinal Cord Injury Data Set elements into the National Institute of Neurological Disorders and Stroke Common Data Elements","volume":"49","author":"F Biering-S\u00f8rensen","year":"2011","journal-title":"Spinal cord"},{"issue":"Suppl 4","key":"pone.0223886.ref010","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1111\/epi.13906","article-title":"Common data elements for preclinical epilepsy research: Standards for data collection and reporting. A TASK3 report of the AES\/ILAE Translational Task Force of the ILAE","volume":"58","author":"LC Harte-Hargrove","year":"2017","journal-title":"Epilepsia"},{"issue":"4","key":"pone.0223886.ref011","doi-asserted-by":"crossref","first-page":"179","DOI":"10.4103\/2229-3485.167101","article-title":"Clinical Data Acquisition Standards Harmonization importance and benefits in clinical data management","volume":"6","author":"JR Gaddale","year":"2015","journal-title":"Perspectives in clinical research"},{"key":"pone.0223886.ref012","unstructured":"U S National Library of Medicine. Common Data Element (CDE) Resource Portal: Glossary; 2017. Available from: https:\/\/www.nlm.nih.gov\/cde\/glossary.html#cdedefinition."},{"issue":"3","key":"pone.0223886.ref013","doi-asserted-by":"crossref","first-page":"837","DOI":"10.1148\/radiol.2016161553","article-title":"Common Data Elements in Radiology","volume":"283","author":"DL Rubin","year":"2017","journal-title":"Radiology"},{"issue":"5","key":"pone.0223886.ref014","doi-asserted-by":"crossref","first-page":"530","DOI":"10.1093\/jamia\/ocx160","article-title":"SemEHR: A general-purpose semantic search system to surface semantic data from clinical notes for tailored care, trial recruitment, and clinical research*","volume":"25","author":"H Wu","year":"2018","journal-title":"Journal of the American Medical Informatics Association"},{"key":"pone.0223886.ref015","doi-asserted-by":"crossref","unstructured":"Haverkamp C, Ganslandt T, Horki P, Boeker M, D\u00f6rfler A, Schwab S, et al. Regional Differences in Thrombectomy Rates: Secondary use of Billing Codes in the MIRACUM (Medical Informatics for Research and Care in University Medicine) Consortium. Clinical neuroradiology. 2018.","DOI":"10.1007\/s00062-017-0656-y"},{"issue":"12","key":"pone.0223886.ref016","doi-asserted-by":"crossref","first-page":"1377","DOI":"10.18553\/jmcp.2016.22.12.1377","article-title":"Determining Multiple Sclerosis Phenotype from Electronic Medical Records","volume":"22","author":"RE Nelson","year":"2016","journal-title":"Journal of Managed Care & Specialty Pharmacy"},{"key":"pone.0223886.ref017","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1016\/j.ijmedinf.2016.10.004","article-title":"Impacts of structuring the electronic health record: Results of a systematic literature review from the perspective of secondary use of patient data","volume":"97","author":"R Vuokko","year":"2017","journal-title":"International journal of medical informatics"},{"issue":"3","key":"pone.0223886.ref018","doi-asserted-by":"crossref","first-page":"185","DOI":"10.1016\/j.ijmedinf.2012.11.008","article-title":"Secondary use of routinely collected patient data in a clinical trial: an evaluation of the effects on patient recruitment and data acquisition","volume":"82","author":"F K\u00f6pcke","year":"2013","journal-title":"International journal of medical informatics"},{"key":"pone.0223886.ref019","article-title":"Fair data for next-generation management of multiple sclerosis","author":"LM Peeters","year":"2017","journal-title":"Multiple sclerosis (Houndmills, Basingstoke, England)"},{"key":"pone.0223886.ref020","doi-asserted-by":"crossref","first-page":"160018","DOI":"10.1038\/sdata.2016.18","article-title":"The FAIR Guiding Principles for scientific data management and stewardship","volume":"3","author":"MD Wilkinson","year":"2016","journal-title":"Scientific data"},{"issue":"1","key":"pone.0223886.ref021","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1007\/s00415-013-7169-7","article-title":"Update on the diagnosis and treatment of neuromyelitis optica: recommendations of the Neuromyelitis Optica Study Group (NEMOS)","volume":"261","author":"C Trebst","year":"2014","journal-title":"Journal of Neurology"},{"issue":"10076","key":"pone.0223886.ref022","doi-asserted-by":"crossref","first-page":"1336","DOI":"10.1016\/S0140-6736(16)30959-X","article-title":"Diagnosis of multiple sclerosis: progress and challenges","volume":"389","author":"WJ Brownlee","year":"2017","journal-title":"Lancet (London, England)"},{"key":"pone.0223886.ref023","unstructured":"Foris LA, Dulebohn SC. StatPearls: Disseminated Encephalomyelitis, Acute. Treasure Island (FL); 2018."},{"key":"pone.0223886.ref024","doi-asserted-by":"crossref","first-page":"109","DOI":"10.1016\/j.msard.2017.08.003","article-title":"Comparing the efficacy of disease-modifying therapies in multiple sclerosis","volume":"18","author":"DD Mitsikostas","year":"2017","journal-title":"Multiple sclerosis and related disorders"},{"issue":"1","key":"pone.0223886.ref025","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1186\/s12883-017-0979-y","article-title":"Cognitive rehabilitation and mindfulness in multiple sclerosis (REMIND-MS): a study protocol for a randomised controlled trial","volume":"17","author":"IM Nauta","year":"2017","journal-title":"BMC neurology"},{"issue":"01","key":"pone.0223886.ref026","doi-asserted-by":"crossref","first-page":"E25","DOI":"10.1055\/s-0043-108830","article-title":"Neuroimmunological Registries in Germany","volume":"02","author":"S Thiel","year":"2018","journal-title":"Neurology International Open"},{"issue":"1","key":"pone.0223886.ref027","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1089\/bio.2014.1212","article-title":"The neuroinflammation biobank in the Department of Neurology, University Hospital Muenster, Germany","volume":"12","author":"A Posevitz-Fejf\u00e1r","year":"2014","journal-title":"Biopreservation and biobanking"},{"key":"pone.0223886.ref028","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1186\/s12874-016-0164-9","article-title":"ODMedit: uniform semantic annotation for data integration in medicine based on a public metadata repository","volume":"16","author":"M Dugas","year":"2016","journal-title":"BMC medical research methodology"},{"key":"pone.0223886.ref029","unstructured":"U S National Library of Medicine. Unified Medical Language System (UMLS); 2017. Available from: https:\/\/cde.nlm.nih.gov\/research\/umls\/."},{"key":"pone.0223886.ref030","doi-asserted-by":"crossref","DOI":"10.1093\/database\/bav121","article-title":"Portal of medical data models: information infrastructure for medical research and healthcare","volume":"2016","author":"M Dugas","year":"2016","journal-title":"Database: the journal of biological databases and curation"},{"issue":"1","key":"pone.0223886.ref031","doi-asserted-by":"crossref","first-page":"566","DOI":"10.1186\/s13063-016-1691-8","article-title":"Design of case report forms based on a public metadata registry: re-use of data elements to improve compatibility of data","volume":"17","author":"M Dugas","year":"2016","journal-title":"Trials"},{"key":"pone.0223886.ref032","first-page":"282","article-title":"Key Data Elements in Myeloid Leukemia","volume":"228","author":"J Varghese","year":"2016","journal-title":"Studies in health technology and informatics"},{"issue":"10","key":"pone.0223886.ref033","doi-asserted-by":"crossref","first-page":"e0164569","DOI":"10.1371\/journal.pone.0164569","article-title":"ODMSummary: A Tool for Automatic Structured Comparison of Multiple Medical Forms Based on Semantic Annotation with the Unified Medical Language System","volume":"11","author":"M Storck","year":"2016","journal-title":"PloS one"},{"key":"pone.0223886.ref034","unstructured":"The R Foundation. CRAN\u2014Package VennDiagram; 2018. Available from: https:\/\/cran.r-project.org\/web\/packages\/VennDiagram\/index.html."},{"key":"pone.0223886.ref035","unstructured":"Agfa-Gevaert Group. AGFA HealthCare; 2018. Available from: https:\/\/global.agfahealthcare.com\/main\/."},{"issue":"194","key":"pone.0223886.ref036","first-page":"4","article-title":"SUS-A quick and dirty usability scale","volume":"189","author":"J Brooke","year":"1996","journal-title":"Usability evaluation in industry"},{"key":"pone.0223886.ref037","unstructured":"Reinhardt W, Ruegenhagen E, Bernard R. System Usability Scale\u2014jetzt auch auf Deutsch.\u2014SAP User Experience Community; 2015. Available from: https:\/\/experience.sap.com\/skillup\/system-usability-scale-jetzt-auch-auf-deutsch\/."},{"key":"pone.0223886.ref038","unstructured":"GmbH L. LimeSurvey: the online survey tool\u2014open source surveys; 2003. Available from: https:\/\/www.limesurvey.org\/de\/."},{"key":"pone.0223886.ref039","unstructured":"von Martial S. User survey before application of basic documentation neuroinflammatory diseases; 2019. Available from: https:\/\/medical-data-models.org\/37711."},{"key":"pone.0223886.ref040","unstructured":"von Martial S. User survey after application of basic documentation neuroinflammatory diseases; 2019. Available from: https:\/\/medical-data-models.org\/37712."},{"key":"pone.0223886.ref041","unstructured":"The MSBase Foundation. The MSBase Registry; 2004. Available from: https:\/\/www.msbase.org."},{"key":"pone.0223886.ref042","doi-asserted-by":"crossref","DOI":"10.1177\/2055217315600193","article-title":"Multiple sclerosis in Latin America: A different disease course severity? A collaborative study from the MSBase Registry","volume":"1","author":"JI Rojas","year":"2015","journal-title":"Multiple sclerosis journal\u2014experimental, translational and clinical"},{"issue":"3","key":"pone.0223886.ref043","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0059694","article-title":"The Australian Multiple Sclerosis (MS) Immunotherapy Study: A Prospective, Multicentre Study of Drug Utilisation Using the MSBase Platform","volume":"8","author":"VG Jokubaitis","year":"2013","journal-title":"PloS one"},{"key":"pone.0223886.ref044","unstructured":"Klotz L, Ge\u00dfner S. Multiple Sclerosis Studies (NCT02461069, NCT02419378); 2018. Available from: https:\/\/medical-data-models.org\/29129."},{"key":"pone.0223886.ref045","unstructured":"Elements NCD. MS CDE Diagnosis and Disease Characteristics Multiple Sclerosis; 2018. Available from: https:\/\/medical-data-models.org\/29133."},{"key":"pone.0223886.ref046","unstructured":"Echterhoff A, Wiendl H, Brix T, Ge\u00dfner S. Neuroinflammatory Biobank, Department of Neurology University Hospital M\u00fcnster; 2018. Available from: https:\/\/medical-data-models.org\/29127."},{"key":"pone.0223886.ref047","unstructured":"Berger K, Maximov S, Bruland P, Ge\u00dfner S. REGIMS Registry Baseline Examination; 2018. Available from: https:\/\/medical-data-models.org\/29126."},{"key":"pone.0223886.ref048","unstructured":"Ge\u00dfner S, Klotz L. Discharge Letter Items Neuroinflammatory Demyelinating Diseases; 2018. Available from: https:\/\/medical-data-models.org\/29124."},{"issue":"1","key":"pone.0223886.ref049","doi-asserted-by":"crossref","first-page":"83","DOI":"10.3414\/ME14-01-0046","article-title":"Frequency analysis of medical concepts in clinical trials and their coverage in MeSH and SNOMED-CT","volume":"54","author":"J Varghese","year":"2015","journal-title":"Methods of information in medicine"},{"key":"pone.0223886.ref050","unstructured":"U S National Library of Medicine. The UMLS Metathesaurus; 2004. Available from: https:\/\/www.nlm.nih.gov\/research\/umls\/knowledge_sources\/metathesaurus\/."},{"key":"pone.0223886.ref051","unstructured":"Ge\u00dfner S. Neuroinflammatory Demyelinating Diseases CNS Common Data Elements; 2018. Available from: https:\/\/medical-data-models.org\/29131."},{"issue":"6","key":"pone.0223886.ref052","doi-asserted-by":"crossref","first-page":"574","DOI":"10.1080\/10447310802205776","article-title":"An Empirical Evaluation of the System Usability Scale","volume":"24","author":"A Bangor","year":"2008","journal-title":"International Journal of Human-Computer Interaction"},{"key":"pone.0223886.ref053","first-page":"837","article-title":"Standardized Cardiovascular Quality Assurance Forms with Multilingual Support, UMLS Coding and Medical Concept Analyses","volume":"216","author":"J Varghese","year":"2015","journal-title":"Studies in health technology and informatics"},{"key":"pone.0223886.ref054","unstructured":"Varghese J. ODMToolbox\u2014CDEGenerator: Institute of Medical Informatics M\u00fcnster; 2018. Available from: https:\/\/odmtoolbox.uni-muenster.de\/CDEGenerator\/CDEGenerator.html."},{"key":"pone.0223886.ref055","unstructured":"National Institute of Neurological Disorders and Stroke. NINDS Common Data Elements; 2018. Available from: https:\/\/www.commondataelements.ninds.nih.gov\/CDE.aspx."},{"key":"pone.0223886.ref056","doi-asserted-by":"crossref","first-page":"313","DOI":"10.3389\/fneur.2017.00313","article-title":"A Proposal for a Patient-Oriented Five-Dimensional Approach for Surveillance and Therapy in Multiple Sclerosis","volume":"8","author":"Y Yalachkov","year":"2017","journal-title":"Frontiers in neurology"},{"issue":"1","key":"pone.0223886.ref057","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1002\/ana.1032","article-title":"Recommended diagnostic criteria for multiple sclerosis: guidelines from the International Panel on the diagnosis of multiple sclerosis","volume":"50","author":"WI McDonald","year":"2001","journal-title":"Annals of neurology"},{"issue":"6","key":"pone.0223886.ref058","doi-asserted-by":"crossref","first-page":"840","DOI":"10.1002\/ana.20703","article-title":"Diagnostic criteria for multiple sclerosis: 2005 revisions to the McDonald Criteria","volume":"58","author":"CH Polman","year":"2005","journal-title":"Annals of neurology"},{"issue":"1","key":"pone.0223886.ref059","doi-asserted-by":"crossref","first-page":"20","DOI":"10.1111\/nyas.12794","article-title":"Neuromyelitis optica and the evolving spectrum of autoimmune aquaporin-4 channelopathies: a decade later","volume":"1366","author":"SJ Pittock","year":"2016","journal-title":"Annals of the New York Academy of Sciences"},{"issue":"2","key":"pone.0223886.ref060","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)\u2013a metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"PA Harris","year":"2009","journal-title":"Journal of biomedical informatics"},{"key":"pone.0223886.ref061","unstructured":"OpenClinica LLC and collaborators, Waltham, MA, USA. OpenClinica open source software; 2018. Available from: www.OpenClinica.com."}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/dx.plos.org\/10.1371\/journal.pone.0223886","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,5,9]],"date-time":"2020-05-09T10:27:54Z","timestamp":1589020074000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0223886"}},"subtitle":[],"editor":[{"given":"Orhan","family":"Aktas","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2019,10,15]]},"references-count":61,"journal-issue":{"issue":"10","published-online":{"date-parts":[[2019,10,15]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0223886","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,10,15]]}}}