{"id":"https://openalex.org/W3037188928","doi":"https://doi.org/10.3233/shti200094","title":"The Status Quo of Rare Diseases Centres for the Development of a Clinical Decision Support System \u2013 A Cross-Sectional Study","display_name":"The Status Quo of Rare Diseases Centres for the Development of a Clinical Decision Support System \u2013 A Cross-Sectional Study","publication_year":2020,"publication_date":"2020-01-01","ids":{"openalex":"https://openalex.org/W3037188928","doi":"https://doi.org/10.3233/shti200094","mag":"3037188928","pmid":"https://pubmed.ncbi.nlm.nih.gov/32578561"},"language":"en","primary_location":{"id":"doi:10.3233/shti200094","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti200094","pdf_url":null,"source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.3233/shti200094","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5000542822","display_name":"Jannik Schaaf","orcid":"https://orcid.org/0000-0002-0058-155X"},"institutions":[{"id":"https://openalex.org/I114090438","display_name":"Goethe University Frankfurt","ror":"https://ror.org/04cvxnb49","country_code":"DE","type":"education","lineage":["https://openalex.org/I114090438"]},{"id":"https://openalex.org/I4210132578","display_name":"University Hospital Frankfurt","ror":"https://ror.org/03f6n9m15","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210132578"]}],"countries":["DE"],"is_corresponding":true,"raw_author_name":"Schaaf Jannik","raw_affiliation_strings":["Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany"],"affiliations":[{"raw_affiliation_string":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5072891251","display_name":"Martin Sedlmayr","orcid":"https://orcid.org/0000-0002-9888-8460"},"institutions":[{"id":"https://openalex.org/I4210162051","display_name":"University Hospital Carl Gustav Carus","ror":"https://ror.org/04za5zm41","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210162051"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Sedlmayr Martin","raw_affiliation_strings":["Institute for Medical Informatics and Biometry, Carl Gustav Carus Faculty of Medicine, Technical University of Dresden, Dresden, Germany"],"affiliations":[{"raw_affiliation_string":"Institute for Medical Informatics and Biometry, Carl Gustav Carus Faculty of Medicine, Technical University of Dresden, Dresden, Germany","institution_ids":["https://openalex.org/I4210162051"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5052931994","display_name":"Hans\u2010Ulrich Prokosch","orcid":"https://orcid.org/0000-0001-6200-753X"},"institutions":[{"id":"https://openalex.org/I181369854","display_name":"Friedrich-Alexander-Universit\u00e4t Erlangen-N\u00fcrnberg","ror":"https://ror.org/00f7hpc57","country_code":"DE","type":"education","lineage":["https://openalex.org/I181369854"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Prokosch Hans-Ulrich","raw_affiliation_strings":["Chair of Medical Informatics, Department of Medical Informatics, Biometrics and Epidemiology, Friedrich-Alexander University Erlangen-N\u00fcrnberg, Erlangen, Germany"],"affiliations":[{"raw_affiliation_string":"Chair of Medical Informatics, Department of Medical Informatics, Biometrics and Epidemiology, Friedrich-Alexander University Erlangen-N\u00fcrnberg, Erlangen, Germany","institution_ids":["https://openalex.org/I181369854"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5072067248","display_name":"Thomas Ganslandt","orcid":"https://orcid.org/0000-0001-6864-8936"},"institutions":[{"id":"https://openalex.org/I112756935","display_name":"Technische Hochschule Mannheim","ror":"https://ror.org/04p61dj41","country_code":"DE","type":"education","lineage":["https://openalex.org/I112756935"]},{"id":"https://openalex.org/I177802217","display_name":"University of Mannheim","ror":"https://ror.org/031bsb921","country_code":"DE","type":"education","lineage":["https://openalex.org/I177802217"]},{"id":"https://openalex.org/I223822909","display_name":"Heidelberg University","ror":"https://ror.org/038t36y30","country_code":"DE","type":"education","lineage":["https://openalex.org/I223822909"]},{"id":"https://openalex.org/I2802164966","display_name":"University Hospital Heidelberg","ror":"https://ror.org/013czdx64","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I2802164966"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Ganslandt Thomas","raw_affiliation_strings":["Heinrich-Lanz-Centre for Digital Health, Department of Biomedical Informatics, University Medicine Mannheim, Mannheim, Germany"],"affiliations":[{"raw_affiliation_string":"Heinrich-Lanz-Centre for Digital Health, Department of Biomedical Informatics, University Medicine Mannheim, Mannheim, Germany","institution_ids":["https://openalex.org/I177802217","https://openalex.org/I223822909","https://openalex.org/I2802164966","https://openalex.org/I112756935"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5069886120","display_name":"Carmen Schade\u2010Brittinger","orcid":"https://orcid.org/0000-0002-9558-3215"},"institutions":[{"id":"https://openalex.org/I161103922","display_name":"Philipps University of Marburg","ror":"https://ror.org/01rdrb571","country_code":"DE","type":"education","lineage":["https://openalex.org/I161103922"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Schade-Brittinger Carmen","raw_affiliation_strings":["Chair of the Coordinating Centre for Clinical Trials, Philipps University Marburg, Marburg, Germany"],"affiliations":[{"raw_affiliation_string":"Chair of the Coordinating Centre for Clinical Trials, Philipps University Marburg, Marburg, Germany","institution_ids":["https://openalex.org/I161103922"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5059027618","display_name":"Michael Wagner","orcid":"https://orcid.org/0000-0002-6300-5752"},"institutions":[{"id":"https://openalex.org/I114090438","display_name":"Goethe University Frankfurt","ror":"https://ror.org/04cvxnb49","country_code":"DE","type":"education","lineage":["https://openalex.org/I114090438"]},{"id":"https://openalex.org/I4210132578","display_name":"University Hospital Frankfurt","ror":"https://ror.org/03f6n9m15","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210132578"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"von Wagner Michael","raw_affiliation_strings":["Executive Department for Medical IT-Systems and Digitalisation, University Hospital Frankfurt, Frankfurt, Germany"],"affiliations":[{"raw_affiliation_string":"Executive Department for Medical IT-Systems and Digitalisation, University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5010281994","display_name":"Dennis Kadioglu","orcid":"https://orcid.org/0000-0002-1561-4924"},"institutions":[{"id":"https://openalex.org/I114090438","display_name":"Goethe University Frankfurt","ror":"https://ror.org/04cvxnb49","country_code":"DE","type":"education","lineage":["https://openalex.org/I114090438"]},{"id":"https://openalex.org/I4210132578","display_name":"University Hospital Frankfurt","ror":"https://ror.org/03f6n9m15","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210132578"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Kadioglu Dennis","raw_affiliation_strings":["Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany"],"affiliations":[{"raw_affiliation_string":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5062253129","display_name":"Katharina Schubert","orcid":"https://orcid.org/0000-0003-3832-7730"},"institutions":[{"id":"https://openalex.org/I4210152429","display_name":"University Hospital in Halle","ror":"https://ror.org/04fe46645","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210152429"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Schubert Katharina","raw_affiliation_strings":["Central German Competence Network for Rare Diseases, University Hospitals Magdeburg & Halle, Germany"],"affiliations":[{"raw_affiliation_string":"Central German Competence Network for Rare Diseases, University Hospitals Magdeburg & Halle, Germany","institution_ids":["https://openalex.org/I4210152429"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5053672243","display_name":"Min Ae Lee\u2010Kirsch","orcid":"https://orcid.org/0000-0002-4008-9869"},"institutions":[{"id":"https://openalex.org/I4210162051","display_name":"University Hospital Carl Gustav Carus","ror":"https://ror.org/04za5zm41","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210162051"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Lee-Kirsch Min Ae","raw_affiliation_strings":["University Centre for Rare Diseases, University Hospital Carl Gustav Carus Dresden, Dresden, Germany"],"affiliations":[{"raw_affiliation_string":"University Centre for Rare Diseases, University Hospital Carl Gustav Carus Dresden, Dresden, Germany","institution_ids":["https://openalex.org/I4210162051"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5070073360","display_name":"Bernhard Kraemer","orcid":"https://orcid.org/0000-0002-0884-107X"},"institutions":[{"id":"https://openalex.org/I223822909","display_name":"Heidelberg University","ror":"https://ror.org/038t36y30","country_code":"DE","type":"education","lineage":["https://openalex.org/I223822909"]},{"id":"https://openalex.org/I2802164966","display_name":"University Hospital Heidelberg","ror":"https://ror.org/013czdx64","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I2802164966"]},{"id":"https://openalex.org/I4210156450","display_name":"University Medical Centre Mannheim","ror":"https://ror.org/05sxbyd35","country_code":"DE","type":"funder","lineage":["https://openalex.org/I4210156450"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Kraemer Bernhard K.","raw_affiliation_strings":["Mannheim Centre for Rare Diseases, University Medicine Mannheim, Medical Faculty Mannheim of the University of Heidelberg, Mannheim, Germany"],"affiliations":[{"raw_affiliation_string":"Mannheim Centre for Rare Diseases, University Medicine Mannheim, Medical Faculty Mannheim of the University of Heidelberg, Mannheim, Germany","institution_ids":["https://openalex.org/I4210156450","https://openalex.org/I223822909","https://openalex.org/I2802164966"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5050301636","display_name":"Beate Winner","orcid":"https://orcid.org/0000-0002-6909-0564"},"institutions":[{"id":"https://openalex.org/I4210088053","display_name":"Universit\u00e4tsklinikum Erlangen","ror":"https://ror.org/0030f2a11","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210088053"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Winner Beate","raw_affiliation_strings":["Centre for Rare Diseases Erlangen, University Hospital Erlangen, Erlangen, Germany"],"affiliations":[{"raw_affiliation_string":"Centre for Rare Diseases Erlangen, University Hospital Erlangen, Erlangen, Germany","institution_ids":["https://openalex.org/I4210088053"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5051390595","display_name":"Tobias Mueller","orcid":"https://orcid.org/0000-0003-0269-634X"},"institutions":[{"id":"https://openalex.org/I161103922","display_name":"Philipps University of Marburg","ror":"https://ror.org/01rdrb571","country_code":"DE","type":"education","lineage":["https://openalex.org/I161103922"]},{"id":"https://openalex.org/I268975460","display_name":"Universit\u00e4tsklinikum Gie\u00dfen und Marburg","ror":"https://ror.org/032nzv584","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I268975460"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Mueller Tobias","raw_affiliation_strings":["Centre for undiagnosed and rare diseases, University Hospital Gie\u00dfen and Marburg, Marburg, Germany"],"affiliations":[{"raw_affiliation_string":"Centre for undiagnosed and rare diseases, University Hospital Gie\u00dfen and Marburg, Marburg, Germany","institution_ids":["https://openalex.org/I161103922","https://openalex.org/I268975460"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5037184482","display_name":"Juergen R. Schaefer","orcid":"https://orcid.org/0000-0001-8320-3206"},"institutions":[{"id":"https://openalex.org/I161103922","display_name":"Philipps University of Marburg","ror":"https://ror.org/01rdrb571","country_code":"DE","type":"education","lineage":["https://openalex.org/I161103922"]},{"id":"https://openalex.org/I268975460","display_name":"Universit\u00e4tsklinikum Gie\u00dfen und Marburg","ror":"https://ror.org/032nzv584","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I268975460"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Schaefer Juergen R.","raw_affiliation_strings":["Centre for undiagnosed and rare diseases, University Hospital Gie\u00dfen and Marburg, Marburg, Germany"],"affiliations":[{"raw_affiliation_string":"Centre for undiagnosed and rare diseases, University Hospital Gie\u00dfen and Marburg, Marburg, Germany","institution_ids":["https://openalex.org/I161103922","https://openalex.org/I268975460"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5073682317","display_name":"Thomas Wagner","orcid":"https://orcid.org/0000-0002-6465-4244"},"institutions":[{"id":"https://openalex.org/I114090438","display_name":"Goethe University Frankfurt","ror":"https://ror.org/04cvxnb49","country_code":"DE","type":"education","lineage":["https://openalex.org/I114090438"]},{"id":"https://openalex.org/I4210132578","display_name":"University Hospital Frankfurt","ror":"https://ror.org/03f6n9m15","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210132578"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Wagner Thomas O.F.","raw_affiliation_strings":["Frankfurt Reference Centre for Rare Diseases, University Hospital Frankfurt, Frankfurt, Germany"],"affiliations":[{"raw_affiliation_string":"Frankfurt Reference Centre for Rare Diseases, University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5031299889","display_name":"Leena Bruckner\u2010Tuderman","orcid":"https://orcid.org/0000-0001-8339-9093"},"institutions":[{"id":"https://openalex.org/I2801240073","display_name":"University Medical Center Freiburg","ror":"https://ror.org/03vzbgh69","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I2801240073"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Bruckner-Tuderman Leena","raw_affiliation_strings":["Freiburg Centre for Rare Diseases, Medical Faculty and Medical Centre - University of Freiburg, Freiburg, Germany"],"affiliations":[{"raw_affiliation_string":"Freiburg Centre for Rare Diseases, Medical Faculty and Medical Centre - University of Freiburg, Freiburg, Germany","institution_ids":["https://openalex.org/I2801240073"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5080014400","display_name":"Oliver Tuescher","orcid":"https://orcid.org/0000-0002-4023-5301"},"institutions":[{"id":"https://openalex.org/I164387090","display_name":"University of Applied Sciences Mainz","ror":"https://ror.org/02re32a17","country_code":"DE","type":"education","lineage":["https://openalex.org/I164387090"]},{"id":"https://openalex.org/I197323543","display_name":"Johannes Gutenberg University Mainz","ror":"https://ror.org/023b0x485","country_code":"DE","type":"education","lineage":["https://openalex.org/I197323543"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Tuescher Oliver","raw_affiliation_strings":["Centre for Rare Diseases of the Nervous System, University Medicine Mainz, Mainz, Germany"],"affiliations":[{"raw_affiliation_string":"Centre for Rare Diseases of the Nervous System, University Medicine Mainz, Mainz, Germany","institution_ids":["https://openalex.org/I164387090","https://openalex.org/I197323543"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5039035898","display_name":"Martin Boeker","orcid":"https://orcid.org/0000-0003-2972-2042"},"institutions":[{"id":"https://openalex.org/I2801240073","display_name":"University Medical Center Freiburg","ror":"https://ror.org/03vzbgh69","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I2801240073"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Boeker Martin","raw_affiliation_strings":["Institute of Medical Biometry and Statistics, Medical Faculty and Medical Centre - University of Freiburg, Freiburg, Germany"],"affiliations":[{"raw_affiliation_string":"Institute of Medical Biometry and Statistics, Medical Faculty and Medical Centre - University of Freiburg, Freiburg, Germany","institution_ids":["https://openalex.org/I2801240073"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5089041972","display_name":"Holger Storf","orcid":"https://orcid.org/0000-0001-8126-9535"},"institutions":[{"id":"https://openalex.org/I114090438","display_name":"Goethe University Frankfurt","ror":"https://ror.org/04cvxnb49","country_code":"DE","type":"education","lineage":["https://openalex.org/I114090438"]},{"id":"https://openalex.org/I4210132578","display_name":"University Hospital Frankfurt","ror":"https://ror.org/03f6n9m15","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210132578"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Storf Holger","raw_affiliation_strings":["Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany"],"affiliations":[{"raw_affiliation_string":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":18,"corresponding_author_ids":["https://openalex.org/A5000542822"],"corresponding_institution_ids":["https://openalex.org/I114090438","https://openalex.org/I4210132578"],"apc_list":null,"apc_paid":null,"fwci":1.5424,"has_fulltext":false,"cited_by_count":5,"citation_normalized_percentile":{"value":0.83804513,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":96},"biblio":{"volume":"271","issue":null,"first_page":"176","last_page":"183"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11710","display_name":"Biomedical Text Mining and Ontologies","score":0.991599977016449,"subfield":{"id":"https://openalex.org/subfields/1312","display_name":"Molecular Biology"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T11710","display_name":"Biomedical Text Mining and Ontologies","score":0.991599977016449,"subfield":{"id":"https://openalex.org/subfields/1312","display_name":"Molecular Biology"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T11642","display_name":"Genomics and Rare Diseases","score":0.991100013256073,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T10350","display_name":"Electronic Health Records Systems","score":0.90829998254776,"subfield":{"id":"https://openalex.org/subfields/3605","display_name":"Health Information Management"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/clinical-decision-support-system","display_name":"Clinical decision support system","score":0.7977549433708191},{"id":"https://openalex.org/keywords/documentation","display_name":"Documentation","score":0.6870204210281372},{"id":"https://openalex.org/keywords/workflow","display_name":"Workflow","score":0.6865701675415039},{"id":"https://openalex.org/keywords/decision-support-system","display_name":"Decision support system","score":0.5928102731704712},{"id":"https://openalex.org/keywords/medical-diagnosis","display_name":"Medical diagnosis","score":0.5755376815795898},{"id":"https://openalex.org/keywords/health-informatics","display_name":"Health informatics","score":0.5710427761077881},{"id":"https://openalex.org/keywords/informatics","display_name":"Informatics","score":0.5487263798713684},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.47860854864120483},{"id":"https://openalex.org/keywords/status-quo","display_name":"Status quo","score":0.45869937539100647},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.32483142614364624},{"id":"https://openalex.org/keywords/database","display_name":"Database","score":0.1699880063533783},{"id":"https://openalex.org/keywords/nursing","display_name":"Nursing","score":0.1659238636493683},{"id":"https://openalex.org/keywords/data-mining","display_name":"Data mining","score":0.13370856642723083},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.1223931610584259},{"id":"https://openalex.org/keywords/pathology","display_name":"Pathology","score":0.09961628913879395}],"concepts":[{"id":"https://openalex.org/C63527458","wikidata":"https://www.wikidata.org/wiki/Q5133829","display_name":"Clinical decision support system","level":3,"score":0.7977549433708191},{"id":"https://openalex.org/C56666940","wikidata":"https://www.wikidata.org/wiki/Q788790","display_name":"Documentation","level":2,"score":0.6870204210281372},{"id":"https://openalex.org/C177212765","wikidata":"https://www.wikidata.org/wiki/Q627335","display_name":"Workflow","level":2,"score":0.6865701675415039},{"id":"https://openalex.org/C107327155","wikidata":"https://www.wikidata.org/wiki/Q330268","display_name":"Decision support system","level":2,"score":0.5928102731704712},{"id":"https://openalex.org/C534262118","wikidata":"https://www.wikidata.org/wiki/Q177719","display_name":"Medical diagnosis","level":2,"score":0.5755376815795898},{"id":"https://openalex.org/C145642194","wikidata":"https://www.wikidata.org/wiki/Q870895","display_name":"Health informatics","level":3,"score":0.5710427761077881},{"id":"https://openalex.org/C191630685","wikidata":"https://www.wikidata.org/wiki/Q4027615","display_name":"Informatics","level":2,"score":0.5487263798713684},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.47860854864120483},{"id":"https://openalex.org/C2776748549","wikidata":"https://www.wikidata.org/wiki/Q201610","display_name":"Status quo","level":2,"score":0.45869937539100647},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.32483142614364624},{"id":"https://openalex.org/C77088390","wikidata":"https://www.wikidata.org/wiki/Q8513","display_name":"Database","level":1,"score":0.1699880063533783},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.1659238636493683},{"id":"https://openalex.org/C124101348","wikidata":"https://www.wikidata.org/wiki/Q172491","display_name":"Data mining","level":1,"score":0.13370856642723083},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.1223931610584259},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.09961628913879395},{"id":"https://openalex.org/C199360897","wikidata":"https://www.wikidata.org/wiki/Q9143","display_name":"Programming language","level":1,"score":0.0},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D003430","descriptor_name":"Cross-Sectional Studies","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003430","descriptor_name":"Cross-Sectional Studies","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003430","descriptor_name":"Cross-Sectional Studies","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005858","descriptor_name":"Germany","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005858","descriptor_name":"Germany","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005858","descriptor_name":"Germany","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012984","descriptor_name":"Software","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012984","descriptor_name":"Software","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012984","descriptor_name":"Software","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D020000","descriptor_name":"Decision Support Systems, Clinical","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D020000","descriptor_name":"Decision Support Systems, Clinical","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D020000","descriptor_name":"Decision Support Systems, Clinical","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.3233/shti200094","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti200094","pdf_url":null,"source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},{"id":"pmid:32578561","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/32578561","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in health technology and informatics","raw_type":null}],"best_oa_location":{"id":"doi:10.3233/shti200094","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti200094","pdf_url":null,"source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/16","display_name":"Peace, Justice and strong institutions","score":0.5899999737739563}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4245848028","https://openalex.org/W2743915337","https://openalex.org/W2046929026","https://openalex.org/W2779278343","https://openalex.org/W1996434451","https://openalex.org/W1569026615","https://openalex.org/W2791725133","https://openalex.org/W2338117633","https://openalex.org/W2112831187","https://openalex.org/W2397677514"],"abstract_inverted_index":{"Clinical":[0],"decision":[1,42,77],"support":[2,43,78,191],"systems":[3],"(CDSS)":[4,45],"help":[5],"to":[6,75,92,130,205,211],"improve":[7],"the":[8,23,29,62,68,80,86,97,116,127,135,152,161,167],"diagnostics":[9],"and":[10,34,83,102,111,175,192,210],"treatment":[11],"of":[12,18,22,32,52,67,96,138,163,170,177,187],"rare":[13],"diseases":[14],"(RD).":[15],"As":[16],"one":[17,146],"four":[19],"funded":[20],"consortia":[21],"Medical":[24],"Informatics":[25],"Initiative":[26],"supported":[27],"by":[28],"Federal":[30],"Ministry":[31],"Education":[33],"Research":[35],"(BMBF,":[36],"Germany),":[37],"MIRACUM":[38,69],"develops":[39],"a":[40,121,139,171,184,193],"clinical":[41],"system":[44],"for":[46,134],"RD":[47],"based":[48],"on":[49,148],"distributed":[50],"data":[51],"ten":[53],"university":[54],"hospitals.":[55],"The":[56,155],"CDSS":[57,140],"will":[58],"be":[59],"developed":[60],"at":[61,79,115],"Rare":[63],"Diseases":[64],"Centres":[65],"(RDC)":[66],"consortium.":[70],"Since":[71],"it":[72],"is":[73,113],"essential":[74],"deliver":[76],"right":[81],"time":[82],"place":[84],"in":[85,126,141,151,198],"clinician's":[87],"workflow,":[88],"this":[89],"study":[90,153],"aimed":[91],"capture":[93,131],"relevant":[94,132,185],"information":[95,133],"RDCs":[98],"regarding":[99,160],"patient":[100,109,164],"admission":[101],"diagnostic":[103,196],"process.":[104],"Additionally,":[105],"we":[106,119,182],"investigated":[107],"how":[108],"documentation":[110,169],"digitalisation":[112],"performed":[114,195],"centres.":[117],"Therefore,":[118],"conducted":[120],"cross-sectional":[122],"survey":[123,156],"involving":[124],"experts":[125],"RDs":[128,149],"domain":[129],"further":[136],"development":[137],"RD.":[142],"For":[143],"each":[144],"centre,":[145],"expert":[147],"participated":[150],"(n=8).":[154],"identified":[157],"several":[158],"challenges":[159],"reuse":[162],"data,":[165],"e.g.":[166],"paper-based":[168],"patient\u00e2\u0102\u0179s":[172],"medical":[173],"history":[174],"coding":[176],"diagnoses":[178],"using":[179],"ICD-10.":[180],"However,":[181],"noticed":[183],"use":[186],"current":[188],"software":[189],"diagnosis":[190],"similarly":[194],"process":[197],"all":[199],"RDC.":[200],"Further":[201],"studies":[202],"are":[203],"needed":[204],"get":[206],"more":[207],"detailed":[208],"insights":[209],"define":[212],"specific":[213],"requirements.":[214]},"counts_by_year":[{"year":2024,"cited_by_count":1},{"year":2022,"cited_by_count":2},{"year":2021,"cited_by_count":1},{"year":2020,"cited_by_count":1}],"updated_date":"2026-02-25T21:11:00.739837","created_date":"2025-10-10T00:00:00"}