{"id":"https://openalex.org/W2798359283","doi":"https://doi.org/10.3233/978-1-61499-852-5-236","title":"Conception of an Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases","display_name":"Conception of an Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases","publication_year":2018,"publication_date":"2018-01-01","ids":{"openalex":"https://openalex.org/W2798359283","doi":"https://doi.org/10.3233/978-1-61499-852-5-236","mag":"2798359283","pmid":"https://pubmed.ncbi.nlm.nih.gov/29677958"},"language":"en","primary_location":{"id":"doi:10.3233/978-1-61499-852-5-236","is_oa":false,"landing_page_url":"https://doi.org/10.3233/978-1-61499-852-5-236","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":null,"license_id":null,"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":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":null,"display_name":"Walther D&eacute;sir&eacute;e","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":true,"raw_author_name":"Walther D&eacute;sir&eacute;e","raw_affiliation_strings":["Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, Germany"],"affiliations":[{"raw_affiliation_string":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, 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, University Hospital Frankfurt, Frankfurt am Main, Germany"],"affiliations":[{"raw_affiliation_string":"Frankfurt Reference Center for Rare Diseases, University Hospital Frankfurt, Frankfurt am Main, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]},{"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":"Schaefer Johanna","raw_affiliation_strings":["Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, Germany"],"affiliations":[{"raw_affiliation_string":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, 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, University Hospital Frankfurt, Frankfurt am Main, Germany"],"affiliations":[{"raw_affiliation_string":"Frankfurt Reference Center for Rare Diseases, University Hospital Frankfurt, Frankfurt am Main, 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, University Hospital Frankfurt, Frankfurt am Main, Germany"],"affiliations":[{"raw_affiliation_string":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, Germany","institution_ids":["https://openalex.org/I4210132578","https://openalex.org/I114090438"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":["https://openalex.org/I114090438","https://openalex.org/I4210132578"],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":1,"citation_normalized_percentile":{"value":0.05910666,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":91,"max":95},"biblio":{"volume":"247","issue":null,"first_page":"236","last_page":"240"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11260","display_name":"Tracheal and airway disorders","score":0.9794999957084656,"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":0.9794999957084656,"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/T13759","display_name":"Medical Imaging and Pathology Studies","score":0.9746000170707703,"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/T11725","display_name":"Immunodeficiency and Autoimmune Disorders","score":0.945900022983551,"subfield":{"id":"https://openalex.org/subfields/2403","display_name":"Immunology"},"field":{"id":"https://openalex.org/fields/24","display_name":"Immunology and Microbiology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/advisory-committee","display_name":"Advisory committee","score":0.5734421014785767},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.5154186487197876},{"id":"https://openalex.org/keywords/the-internet","display_name":"The Internet","score":0.4305607080459595},{"id":"https://openalex.org/keywords/set","display_name":"Set (abstract data type)","score":0.4286738634109497},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.40425431728363037},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.19267916679382324},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.17338824272155762},{"id":"https://openalex.org/keywords/public-administration","display_name":"Public administration","score":0.07835879921913147}],"concepts":[{"id":"https://openalex.org/C3017489713","wikidata":"https://www.wikidata.org/wiki/Q4686866","display_name":"Advisory committee","level":2,"score":0.5734421014785767},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.5154186487197876},{"id":"https://openalex.org/C110875604","wikidata":"https://www.wikidata.org/wiki/Q75","display_name":"The Internet","level":2,"score":0.4305607080459595},{"id":"https://openalex.org/C177264268","wikidata":"https://www.wikidata.org/wiki/Q1514741","display_name":"Set (abstract data type)","level":2,"score":0.4286738634109497},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.40425431728363037},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.19267916679382324},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.17338824272155762},{"id":"https://openalex.org/C3116431","wikidata":"https://www.wikidata.org/wiki/Q31728","display_name":"Public administration","level":1,"score":0.07835879921913147},{"id":"https://openalex.org/C199360897","wikidata":"https://www.wikidata.org/wiki/Q9143","display_name":"Programming language","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":"D020407","descriptor_name":"Internet","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D020407","descriptor_name":"Internet","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D020407","descriptor_name":"Internet","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":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:10.3233/978-1-61499-852-5-236","is_oa":false,"landing_page_url":"https://doi.org/10.3233/978-1-61499-852-5-236","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":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},{"id":"pmid:29677958","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/29677958","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":null,"sustainable_development_goals":[{"score":0.41999998688697815,"id":"https://metadata.un.org/sdg/17","display_name":"Partnerships for the goals"}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4391375266","https://openalex.org/W2899084033","https://openalex.org/W2748952813","https://openalex.org/W3031052312","https://openalex.org/W4389568370","https://openalex.org/W3032375762","https://openalex.org/W1995515455","https://openalex.org/W2080531066","https://openalex.org/W3108674512","https://openalex.org/W1506200166"],"abstract_inverted_index":{"Due":[0],"to":[1,54,60,106,119,151],"low":[2],"prevalence":[3],"of":[4,9,39,87,99,129,136,141],"rare":[5,13,93,107],"diseases":[6,14,95,109,126],"and":[7,23,29,62,139,145],"lack":[8],"expertise,":[10],"patients":[11,49],"suffering":[12],"are":[15,21],"challenged":[16],"with":[17],"finding":[18],"experts":[19,56],"that":[20],"specialized":[22],"experienced":[24],"in":[25,110],"treating":[26],"their":[27,57,64,67],"conditions":[28],"get":[30],"qualified":[31],"answers.":[32],"To":[33],"address":[34],"this":[35,101],"issue,":[36],"the":[37,52,72,85,88,114,137,142,148],"approach":[38],"an":[40,77,134],"interactive":[41],"platform":[42,75,102,144,149],"was":[43],"made,":[44],"which":[45,81],"should":[46],"allow":[47],"affected":[48],"or":[50,127],"physicians":[51],"possibility":[53],"ask":[55],"specific":[58],"questions":[59],"gather":[61],"improve":[63],"knowledge":[65],"about":[66],"condition.":[68],"This":[69,131],"paper":[70,132],"introduces":[71],"pan-European":[73],"Internet":[74],"EXABO,":[76],"Expert":[78],"Advisory":[79],"Board,":[80],"is":[82,103,116,150],"developed":[83],"within":[84],"framework":[86],"European":[89],"Reference":[90],"Network":[91],"for":[92,124],"respiratory":[94,108],"(ERN-LUNG).":[96],"The":[97],"purpose":[98],"establishing":[100],"initially":[104],"dedicated":[105],"whole":[111],"Europe,":[112],"whilst":[113],"set-up":[115],"however,":[117],"planned":[118],"be":[120,152],"a":[121],"generic":[122],"tool":[123],"additional":[125],"groups":[128],"diseases.":[130],"gives":[133],"overview":[135],"concept":[138],"planning":[140],"EXABO":[143],"shows":[146],"how":[147],"implemented.":[153]},"counts_by_year":[{"year":2025,"cited_by_count":1}],"updated_date":"2026-04-16T08:26:57.006410","created_date":"2025-10-10T00:00:00"}
