{"id":"https://openalex.org/W3036987256","doi":"https://doi.org/10.3233/shti200309","title":"Implementation of EXABO \u2013 An Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases","display_name":"Implementation of EXABO \u2013 An Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases","publication_year":2020,"publication_date":"2020-01-01","ids":{"openalex":"https://openalex.org/W3036987256","doi":"https://doi.org/10.3233/shti200309","mag":"3036987256","pmid":"https://pubmed.ncbi.nlm.nih.gov/32570529"},"language":"en","primary_location":{"id":"doi:10.3233/shti200309","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti200309","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":"review","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.3233/shti200309","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5001109057","display_name":"D\u00e9sir\u00e9e Walther","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":"Walther D\u00e9sir\u00e9e","raw_affiliation_strings":["Medical Informatics Group (MIG), Frankfurt, University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Medical Informatics Group (MIG), Frankfurt, University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5084392884","display_name":"Olivia Steinmann","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":"Steinmann Olivia","raw_affiliation_strings":["Frankfurt Reference Center for Rare Diseases (FRZSE), University Hospital Frankfurt, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Frankfurt Reference Center for Rare Diseases (FRZSE), University Hospital Frankfurt, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"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 Center for Rare Diseases (FRZSE), University Hospital Frankfurt, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Frankfurt Reference Center for Rare Diseases (FRZSE), University Hospital Frankfurt, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"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 (MIG), Frankfurt, University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Medical Informatics Group (MIG), Frankfurt, University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":1.3828,"has_fulltext":false,"cited_by_count":2,"citation_normalized_percentile":{"value":0.80669399,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":94},"biblio":{"volume":"270","issue":null,"first_page":"986","last_page":"990"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11260","display_name":"Tracheal and airway disorders","score":0.9858999848365784,"subfield":{"id":"https://openalex.org/subfields/2740","display_name":"Pulmonary and Respiratory Medicine"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11260","display_name":"Tracheal and airway disorders","score":0.9858999848365784,"subfield":{"id":"https://openalex.org/subfields/2740","display_name":"Pulmonary and Respiratory Medicine"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10665","display_name":"Cystic Fibrosis Research Advances","score":0.9768999814987183,"subfield":{"id":"https://openalex.org/subfields/2740","display_name":"Pulmonary and Respiratory Medicine"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10870","display_name":"Interstitial Lung Diseases and Idiopathic Pulmonary Fibrosis","score":0.9736999869346619,"subfield":{"id":"https://openalex.org/subfields/2740","display_name":"Pulmonary and Respiratory Medicine"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/european-commission","display_name":"European commission","score":0.7487687468528748},{"id":"https://openalex.org/keywords/context","display_name":"Context (archaeology)","score":0.652978241443634},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.526370108127594},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.4791778326034546},{"id":"https://openalex.org/keywords/business","display_name":"Business","score":0.4108680188655853},{"id":"https://openalex.org/keywords/european-union","display_name":"European union","score":0.337741494178772},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.25920236110687256},{"id":"https://openalex.org/keywords/geography","display_name":"Geography","score":0.08828076720237732},{"id":"https://openalex.org/keywords/law","display_name":"Law","score":0.07828235626220703}],"concepts":[{"id":"https://openalex.org/C3020782553","wikidata":"https://www.wikidata.org/wiki/Q8880","display_name":"European commission","level":3,"score":0.7487687468528748},{"id":"https://openalex.org/C2779343474","wikidata":"https://www.wikidata.org/wiki/Q3109175","display_name":"Context (archaeology)","level":2,"score":0.652978241443634},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.526370108127594},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.4791778326034546},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.4108680188655853},{"id":"https://openalex.org/C2910001868","wikidata":"https://www.wikidata.org/wiki/Q458","display_name":"European union","level":2,"score":0.337741494178772},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.25920236110687256},{"id":"https://openalex.org/C205649164","wikidata":"https://www.wikidata.org/wiki/Q1071","display_name":"Geography","level":0,"score":0.08828076720237732},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.07828235626220703},{"id":"https://openalex.org/C166957645","wikidata":"https://www.wikidata.org/wiki/Q23498","display_name":"Archaeology","level":1,"score":0.0},{"id":"https://openalex.org/C105639569","wikidata":"https://www.wikidata.org/wiki/Q582577","display_name":"Economic policy","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D005060","descriptor_name":"Europe","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005060","descriptor_name":"Europe","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005060","descriptor_name":"Europe","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":"D012120","descriptor_name":"Respiration Disorders","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D012120","descriptor_name":"Respiration Disorders","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D012120","descriptor_name":"Respiration Disorders","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":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","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":true}],"locations_count":2,"locations":[{"id":"doi:10.3233/shti200309","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti200309","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:32570529","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/32570529","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/shti200309","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti200309","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":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2104275922","https://openalex.org/W2763466190","https://openalex.org/W4389730441","https://openalex.org/W2801370226","https://openalex.org/W4206750595","https://openalex.org/W4238446100","https://openalex.org/W2802103191","https://openalex.org/W2967455187","https://openalex.org/W2053925504","https://openalex.org/W2019650387"],"abstract_inverted_index":{"Rare":[0],"conditions":[1],"can":[2],"make":[3],"it":[4],"difficult":[5],"for":[6,18,44,72,85],"physicians":[7],"and":[8,16,42,93,157],"healthcare":[9,63],"providers":[10,64],"to":[11,37,68,125],"find":[12],"the":[13,47,52,103,107,143,148,151,154,158],"right":[14],"answers":[15],"treatment":[17,41],"patients":[19,73,86],"suffering":[20],"rare":[21,29,88,99,133],"diseases.":[22,101,135],"The":[23,76],"number":[24],"of":[25,98,105,132,142,150],"experts":[26],"specializing":[27],"in":[28,31],"diseases":[30,90],"Europe":[32,66],"is":[33,115],"low.":[34],"In":[35,102],"order":[36],"ensure":[38],"qualified":[39],"diagnosis,":[40],"care":[43,71,92],"these":[45],"patients,":[46],"European":[48,53,77],"Commission":[49],"has":[50,82],"founded":[51],"Reference":[54,78],"Networks":[55],"(ERNs),":[56],"which":[57],"are":[58],"virtual":[59],"networks":[60],"that":[61,160],"include":[62],"across":[65,74],"aiming":[67],"provide":[69],"better":[70],"Europe.":[75],"Network":[79],"LUNG":[80],"(ERN-LUNG)":[81],"been":[83,162],"established":[84],"with":[87],"respiratory":[89,100,134],"seeking":[91],"advice":[94],"on":[95,121],"all":[96,130],"aspects":[97],"context":[104],"ERN-LUNG,":[106],"Expert":[108],"Advisory":[109],"Board":[110],"(EXABO)":[111],"was":[112],"implemented.":[113],"EXABO":[114,152],"a":[116,122,139],"pan-European":[117],"internet":[118],"platform":[119],"based":[120],"question-answering":[123],"system":[124],"support":[126],"answering":[127],"questions":[128],"regarding":[129,147],"areas":[131],"This":[136],"paper":[137],"gives":[138],"brief":[140],"overview":[141],"first":[144],"steps":[145],"taken":[146],"implementation":[149],"platform,":[153],"challenges":[155],"faced":[156],"lessons":[159],"have":[161],"learned.":[163]},"counts_by_year":[{"year":2024,"cited_by_count":1},{"year":2022,"cited_by_count":1}],"updated_date":"2026-06-11T09:08:48.828518","created_date":"2025-10-10T00:00:00"}