{"id":"https://openalex.org/W3087696663","doi":"https://doi.org/10.1186/s12911-020-01254-3","title":"Interviews with experts in rare diseases for the development of clinical decision support system software - a qualitative study","display_name":"Interviews with experts in rare diseases for the development of clinical decision support system software - a qualitative study","publication_year":2020,"publication_date":"2020-09-16","ids":{"openalex":"https://openalex.org/W3087696663","doi":"https://doi.org/10.1186/s12911-020-01254-3","mag":"3087696663","pmid":"https://pubmed.ncbi.nlm.nih.gov/32938448"},"language":"en","primary_location":{"id":"doi:10.1186/s12911-020-01254-3","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-020-01254-3","pdf_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-020-01254-3","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","datacite","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-020-01254-3","any_repository_has_fulltext":true},"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":"Jannik Schaaf","raw_affiliation_strings":["Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany. jannik.schaaf@kgu.de","Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany"],"raw_orcid":"https://orcid.org/0000-0002-0058-155X","affiliations":[{"raw_affiliation_string":"Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany. jannik.schaaf@kgu.de","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]},{"raw_affiliation_string":"Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"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":"Hans-Ulrich Prokosch","raw_affiliation_strings":["Chair of Medical Informatics, Department of Medical Informatics, Biometrics and Epidemiology, Friedrich-Alexander University Erlangen-N\u00fcrnberg, Erlangen, Germany"],"raw_orcid":null,"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/A5039035898","display_name":"Martin Boeker","orcid":"https://orcid.org/0000-0003-2972-2042"},"institutions":[{"id":"https://openalex.org/I161046081","display_name":"University of Freiburg","ror":"https://ror.org/0245cg223","country_code":"DE","type":"education","lineage":["https://openalex.org/I161046081"]},{"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":"Martin Boeker","raw_affiliation_strings":["Institute of Medical Biometry and Statistics, Medical Faculty and Medical Centre - University of Freiburg, Freiburg, Germany","Institute of Medical Biometry and Statistics, Medical Faculty and Medical Centre \u2013 University of Freiburg, Freiburg, Germany"],"raw_orcid":null,"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"]},{"raw_affiliation_string":"Institute of Medical Biometry and Statistics, Medical Faculty and Medical Centre \u2013 University of Freiburg, Freiburg, Germany","institution_ids":["https://openalex.org/I2801240073","https://openalex.org/I161046081"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5029656158","display_name":"Johanna Schaefer","orcid":null},"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":"Johanna Schaefer","raw_affiliation_strings":["Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5070788834","display_name":"Jessica Vasseur","orcid":"https://orcid.org/0000-0002-7378-9829"},"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":"Jessica Vasseur","raw_affiliation_strings":["Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"middle","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":"Holger Storf","raw_affiliation_strings":["Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5072891251","display_name":"Martin Sedlmayr","orcid":"https://orcid.org/0000-0002-9888-8460"},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Martin Sedlmayr","raw_affiliation_strings":["Institute for Medical Informatics and Biometry, Carl Gustav Carus Faculty of Medicine Technical University of Dresden, Dresden, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Institute for Medical Informatics and Biometry, Carl Gustav Carus Faculty of Medicine Technical University of Dresden, Dresden, Germany","institution_ids":[]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":7,"corresponding_author_ids":["https://openalex.org/A5000542822"],"corresponding_institution_ids":["https://openalex.org/I114090438","https://openalex.org/I4210132578"],"apc_list":{"value":1570,"currency":"GBP","value_usd":1925},"apc_paid":{"value":1846,"currency":"EUR","value_usd":1990},"fwci":2.2904,"has_fulltext":true,"cited_by_count":27,"citation_normalized_percentile":{"value":0.88590673,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":99},"biblio":{"volume":"20","issue":"1","first_page":"230","last_page":"230"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11642","display_name":"Genomics and Rare Diseases","score":0.9767000079154968,"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"}},"topics":[{"id":"https://openalex.org/T11642","display_name":"Genomics and Rare Diseases","score":0.9767000079154968,"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":0.00800000037997961,"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"}},{"id":"https://openalex.org/T11710","display_name":"Biomedical Text Mining and Ontologies","score":0.00139999995008111,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/workflow","display_name":"Workflow","score":0.7629750370979309},{"id":"https://openalex.org/keywords/health-informatics","display_name":"Health informatics","score":0.7474782466888428},{"id":"https://openalex.org/keywords/clinical-decision-support-system","display_name":"Clinical decision support system","score":0.7334195971488953},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.574458658695221},{"id":"https://openalex.org/keywords/qualitative-research","display_name":"Qualitative research","score":0.5615398287773132},{"id":"https://openalex.org/keywords/informatics","display_name":"Informatics","score":0.5493079423904419},{"id":"https://openalex.org/keywords/focus-group","display_name":"Focus group","score":0.5398079752922058},{"id":"https://openalex.org/keywords/decision-support-system","display_name":"Decision support system","score":0.493373304605484},{"id":"https://openalex.org/keywords/family-medicine","display_name":"Family medicine","score":0.4889770746231079},{"id":"https://openalex.org/keywords/medical-education","display_name":"Medical education","score":0.4527776539325714},{"id":"https://openalex.org/keywords/german","display_name":"German","score":0.442491352558136},{"id":"https://openalex.org/keywords/nursing","display_name":"Nursing","score":0.25581979751586914},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.24350783228874207},{"id":"https://openalex.org/keywords/data-mining","display_name":"Data mining","score":0.13383066654205322},{"id":"https://openalex.org/keywords/public-health","display_name":"Public health","score":0.11661988496780396},{"id":"https://openalex.org/keywords/database","display_name":"Database","score":0.09000489115715027}],"concepts":[{"id":"https://openalex.org/C177212765","wikidata":"https://www.wikidata.org/wiki/Q627335","display_name":"Workflow","level":2,"score":0.7629750370979309},{"id":"https://openalex.org/C145642194","wikidata":"https://www.wikidata.org/wiki/Q870895","display_name":"Health informatics","level":3,"score":0.7474782466888428},{"id":"https://openalex.org/C63527458","wikidata":"https://www.wikidata.org/wiki/Q5133829","display_name":"Clinical decision support system","level":3,"score":0.7334195971488953},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.574458658695221},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.5615398287773132},{"id":"https://openalex.org/C191630685","wikidata":"https://www.wikidata.org/wiki/Q4027615","display_name":"Informatics","level":2,"score":0.5493079423904419},{"id":"https://openalex.org/C56995899","wikidata":"https://www.wikidata.org/wiki/Q1126687","display_name":"Focus group","level":2,"score":0.5398079752922058},{"id":"https://openalex.org/C107327155","wikidata":"https://www.wikidata.org/wiki/Q330268","display_name":"Decision support system","level":2,"score":0.493373304605484},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.4889770746231079},{"id":"https://openalex.org/C509550671","wikidata":"https://www.wikidata.org/wiki/Q126945","display_name":"Medical education","level":1,"score":0.4527776539325714},{"id":"https://openalex.org/C154775046","wikidata":"https://www.wikidata.org/wiki/Q188","display_name":"German","level":2,"score":0.442491352558136},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.25581979751586914},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.24350783228874207},{"id":"https://openalex.org/C124101348","wikidata":"https://www.wikidata.org/wiki/Q172491","display_name":"Data mining","level":1,"score":0.13383066654205322},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.11661988496780396},{"id":"https://openalex.org/C77088390","wikidata":"https://www.wikidata.org/wiki/Q8513","display_name":"Database","level":1,"score":0.09000489115715027},{"id":"https://openalex.org/C119599485","wikidata":"https://www.wikidata.org/wiki/Q43035","display_name":"Electrical engineering","level":1,"score":0.0},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0},{"id":"https://openalex.org/C95457728","wikidata":"https://www.wikidata.org/wiki/Q309","display_name":"History","level":0,"score":0.0},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C166957645","wikidata":"https://www.wikidata.org/wiki/Q23498","display_name":"Archaeology","level":1,"score":0.0},{"id":"https://openalex.org/C127413603","wikidata":"https://www.wikidata.org/wiki/Q11023","display_name":"Engineering","level":0,"score":0.0},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.0},{"id":"https://openalex.org/C162853370","wikidata":"https://www.wikidata.org/wiki/Q39809","display_name":"Marketing","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","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":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010820","descriptor_name":"Physicians","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010820","descriptor_name":"Physicians","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010820","descriptor_name":"Physicians","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":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D036301","descriptor_name":"Qualitative Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D036301","descriptor_name":"Qualitative Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D036301","descriptor_name":"Qualitative Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":9,"locations":[{"id":"doi:10.1186/s12911-020-01254-3","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-020-01254-3","pdf_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-020-01254-3","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},{"id":"pmid:32938448","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/32938448","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":"BMC medical informatics and decision making","raw_type":null},{"id":"pmh:oai:aleph.bib-bvb.de:BVB01-033579412","is_oa":false,"landing_page_url":"https://nbn-resolving.org/urn:nbn:de:bvb:29-opus4-178005","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"software, multimedia"},{"id":"pmh:oai:doaj.org/article:3f7ee055308b43388d3495ceeba2cc9a","is_oa":true,"landing_page_url":"https://doaj.org/article/3f7ee055308b43388d3495ceeba2cc9a","pdf_url":null,"source":{"id":"https://openalex.org/S112646816","display_name":"SHILAP Revista de lepidopterolog\u00eda","issn_l":"0300-5267","issn":["0300-5267","2340-4078"],"is_oa":true,"is_in_doaj":true,"is_core":false,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by-sa","license_id":"https://openalex.org/licenses/cc-by-sa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"BMC Medical Informatics and Decision Making, Vol 20, Iss 1, Pp 1-11 (2020)","raw_type":"article"},{"id":"pmh:oai:frl.publisso.de:frl:6464165","is_oa":true,"landing_page_url":"https://repository.publisso.de/resource/frl:6464165","pdf_url":null,"source":{"id":"https://openalex.org/S4377196269","display_name":"PUBLISSO (German National Library of Medicine)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I4210112663","host_organization_name":"ZB MED - Information Centre for Life Sciences","host_organization_lineage":["https://openalex.org/I4210112663"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"http://lobid.org/resources/99370673400706441#!, 20(1):230","raw_type":"Zeitschriftenartikel"},{"id":"pmh:oai:publikationen.ub.uni-frankfurt.de:79187","is_oa":true,"landing_page_url":"https://nbn-resolving.org/urn:nbn:de:hebis:30:3-791870","pdf_url":null,"source":{"id":"https://openalex.org/S4306400432","display_name":"Publication Server of Goethe University Frankfurt am Main (Goethe University Frankfurt)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I114090438","host_organization_name":"Goethe University Frankfurt","host_organization_lineage":["https://openalex.org/I114090438"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"article"},{"id":"pmh:oai:pubmedcentral.nih.gov:7493382","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/7493382","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"BMC Med Inform Decis Mak","raw_type":"Text"},{"id":"pmh:oai:ub.uni-erlangen.de-opus:17800","is_oa":true,"landing_page_url":"https://opus4.kobv.de/opus4-fau/frontdoor/index/index/docId/17800","pdf_url":null,"source":{"id":"https://openalex.org/S4306401636","display_name":"OPUS Repository (Kooperativer Bibliotheksverbund Berlin-Brandenburg)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"article"},{"id":"doi:10.6084/m9.figshare.c.5124107.v1","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.c.5124107.v1","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":null,"raw_source_name":null,"raw_type":"article"}],"best_oa_location":{"id":"doi:10.1186/s12911-020-01254-3","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-020-01254-3","pdf_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-020-01254-3","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.44999998807907104,"id":"https://metadata.un.org/sdg/16","display_name":"Peace, Justice and strong institutions"}],"awards":[{"id":"https://openalex.org/G1901524565","display_name":null,"funder_award_id":"01ZZ1801L","funder_id":"https://openalex.org/F4320321114","funder_display_name":"Bundesministerium f\u00fcr Bildung und Forschung"},{"id":"https://openalex.org/G3509144782","display_name":null,"funder_award_id":"01ZZ1801B","funder_id":"https://openalex.org/F4320321114","funder_display_name":"Bundesministerium f\u00fcr Bildung und Forschung"},{"id":"https://openalex.org/G8029837981","display_name":null,"funder_award_id":"01ZZ1801A","funder_id":"https://openalex.org/F4320321114","funder_display_name":"Bundesministerium f\u00fcr Bildung und Forschung"},{"id":"https://openalex.org/G8510452338","display_name":null,"funder_award_id":"01ZZ1801C","funder_id":"https://openalex.org/F4320321114","funder_display_name":"Bundesministerium f\u00fcr Bildung und Forschung"}],"funders":[{"id":"https://openalex.org/F4320321114","display_name":"Bundesministerium f\u00fcr Bildung und Forschung","ror":"https://ror.org/04pz7b180"}],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W3087696663.pdf","grobid_xml":"https://content.openalex.org/works/W3087696663.grobid-xml"},"referenced_works_count":64,"referenced_works":["https://openalex.org/W4693461","https://openalex.org/W74137649","https://openalex.org/W85486977","https://openalex.org/W115394847","https://openalex.org/W159321140","https://openalex.org/W1556138840","https://openalex.org/W1575867849","https://openalex.org/W1842756664","https://openalex.org/W1906872188","https://openalex.org/W1974978256","https://openalex.org/W1976268474","https://openalex.org/W1981986007","https://openalex.org/W2009760570","https://openalex.org/W2011088256","https://openalex.org/W2012361142","https://openalex.org/W2020879429","https://openalex.org/W2027134727","https://openalex.org/W2066930779","https://openalex.org/W2079567258","https://openalex.org/W2096169020","https://openalex.org/W2106258298","https://openalex.org/W2112046009","https://openalex.org/W2115441252","https://openalex.org/W2123934201","https://openalex.org/W2132131059","https://openalex.org/W2138664283","https://openalex.org/W2162151166","https://openalex.org/W2241089219","https://openalex.org/W2308510141","https://openalex.org/W2331393505","https://openalex.org/W2401296082","https://openalex.org/W2405149139","https://openalex.org/W2411262396","https://openalex.org/W2416156128","https://openalex.org/W2500177803","https://openalex.org/W2501493752","https://openalex.org/W2560150188","https://openalex.org/W2595755813","https://openalex.org/W2600593920","https://openalex.org/W2613345204","https://openalex.org/W2743415974","https://openalex.org/W2754799758","https://openalex.org/W2772093261","https://openalex.org/W2789220831","https://openalex.org/W2789922031","https://openalex.org/W2790841064","https://openalex.org/W2792593479","https://openalex.org/W2802847886","https://openalex.org/W2807924164","https://openalex.org/W2900632039","https://openalex.org/W2912971066","https://openalex.org/W2934493193","https://openalex.org/W2940628269","https://openalex.org/W2942275776","https://openalex.org/W2943735103","https://openalex.org/W2955550781","https://openalex.org/W2966351171","https://openalex.org/W2973267506","https://openalex.org/W2973941803","https://openalex.org/W2988933831","https://openalex.org/W2989353161","https://openalex.org/W2990181129","https://openalex.org/W3007983644","https://openalex.org/W3102251128"],"related_works":["https://openalex.org/W2743915337","https://openalex.org/W4245848028","https://openalex.org/W2046929026","https://openalex.org/W2779278343","https://openalex.org/W1569026615","https://openalex.org/W2791725133","https://openalex.org/W4232131108","https://openalex.org/W1996434451","https://openalex.org/W2112831187","https://openalex.org/W2397677514"],"abstract_inverted_index":{"BACKGROUND:":[0],"Patients":[1],"with":[2,112,143,295],"rare":[3],"diseases":[4],"(RDs)":[5],"are":[6,211,223],"often":[7],"diagnosed":[8],"too":[9],"late":[10],"or":[11,244,252],"not":[12],"at":[13,121,127],"all.":[14],"Clinical":[15],"decision":[16,95],"support":[17,21],"systems":[18],"(CDSSs)":[19],"could":[20],"the":[22,43,70,75,86,99,122,128,191,214,250,256,259,268,272,280,309,312,329],"diagnosis":[23,87,133,246],"in":[24,30,42,190,213],"RDs.":[25,137,298,318,332],"The":[26,148,193,225,289],"MIRACUM":[27,129],"(Medical":[28],"Informatics":[29,46],"Research":[31],"and":[32,97,134,156,200,277],"Medicine)":[33],"consortium,":[34],"which":[35,90,131,231],"is":[36,92,247,303,321],"one":[37],"of":[38,77,136,185,258,267,286,314],"four":[39],"funded":[40],"consortia":[41],"German":[44],"Medical":[45],"Initiative,":[47],"will":[48],"develop":[49],"a":[50,78,105,144,206,265,287,304,315],"CDSS":[51,79,296,316],"for":[52,74,80,94,103,297,311,317],"RDs":[53,81,113,229],"based":[54],"on":[55,152,208,249,331],"distributed":[56],"clinical":[57],"data":[58,91,164,172],"from":[59,118,202,279],"ten":[60],"university":[61],"hospitals.":[62],"This":[63,300],"qualitative":[64,178,301],"study":[65,302],"aims":[66],"to":[67,282,323],"investigate":[68],"(1)":[69],"relevant":[71],"organizational":[72],"conditions":[73],"operation":[76],"when":[82],"diagnose":[83],"patients":[84],"(e.g.":[85],"workflow),":[88],"(2)":[89],"necessary":[93,322],"support,":[96],"(3)":[98],"appropriate":[100],"user":[101],"group":[102],"such":[104],"CDSS.":[106,288],"METHODS:":[107],"Interviews":[108],"were":[109,116,150,169,188],"carried":[110],"out":[111],"experts.":[114],"Participants":[115],"recruited":[117],"staff":[119],"physicians":[120,201,222,276],"Rare":[123],"Disease":[124],"Centers":[125],"(RDCs)":[126],"locations,":[130],"offer":[132],"treatment":[135],"An":[138],"interview":[139],"guide":[140],"was":[141,174],"developed":[142],"category-guided":[145],"deductive":[146],"approach.":[147,181],"interviews":[149,168],"recorded":[151],"an":[153],"audio":[154],"device":[155],"then":[157],"transcribed":[158],"into":[159],"written":[160],"form.":[161],"We":[162],"continued":[163],"collection":[165],"until":[166],"all":[167],"completed.":[170],"Afterwards,":[171],"analysis":[173,180],"performed":[175],"using":[176],"Mayring's":[177],"content":[179],"RESULTS:":[182],"A":[183],"total":[184],"seven":[186],"experts":[187,226,273,278,290,330],"included":[189],"study.":[192],"results":[194],"show":[195],"that":[196,228],"medical":[197],"center":[198],"guides":[199],"RDC":[203],"B-centers":[204,281],"(with":[205],"focus":[207],"different":[209,293],"RDs)":[210],"involved":[212],"diagnostic":[215,260],"process.":[216],"Furthermore,":[217,271],"interdisciplinary":[218],"case":[219],"discussions":[220],"between":[221],"conducted.":[224],"explained":[227],"exist":[230],"cannot":[232],"be":[233,283],"fully":[234],"differentiated,":[235],"but":[236],"rather":[237],"described":[238],"only":[239],"by":[240,326],"their":[241],"overall":[242],"symptoms":[243],"findings:":[245],"dependent":[248],"disease":[251,253],"group.":[254],"At":[255],"end":[257],"process,":[261],"most":[262],"centers":[263],"prepare":[264],"summary":[266],"patient":[269],"case.":[270],"considered":[274],"both":[275],"potential":[284],"users":[285],"also":[291,327],"have":[292],"experiences":[294],"CONCLUSIONS:":[299],"first":[305],"step":[306],"towards":[307],"establishing":[308],"requirements":[310],"development":[313],"Further":[319],"research":[320],"create":[324],"solutions":[325],"including":[328]},"counts_by_year":[{"year":2025,"cited_by_count":3},{"year":2024,"cited_by_count":11},{"year":2023,"cited_by_count":1},{"year":2022,"cited_by_count":4},{"year":2021,"cited_by_count":8}],"updated_date":"2026-04-29T09:16:38.111599","created_date":"2025-10-10T00:00:00"}
