{"id":"https://openalex.org/W7155212888","doi":"https://doi.org/10.1007/978-3-032-16708-8_11","title":"When \u2018Scarce\u2019 Becomes \u2018Too Scarce\u2019: The Rare Diseases Drama","display_name":"When \u2018Scarce\u2019 Becomes \u2018Too Scarce\u2019: The Rare Diseases Drama","publication_year":2026,"publication_date":"2026-01-01","ids":{"openalex":"https://openalex.org/W7155212888","doi":"https://doi.org/10.1007/978-3-032-16708-8_11"},"language":"en","primary_location":{"id":"doi:10.1007/978-3-032-16708-8_11","is_oa":false,"landing_page_url":"https://doi.org/10.1007/978-3-032-16708-8_11","pdf_url":null,"source":{"id":"https://openalex.org/S2764900261","display_name":"Communications in computer and information science","issn_l":"1865-0929","issn":["1865-0929","1865-0937"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319900","host_organization_name":"Springer Science+Business Media","host_organization_lineage":["https://openalex.org/P4310319900","https://openalex.org/P4310319965"],"host_organization_lineage_names":["Springer Science+Business Media","Springer Nature"],"type":"book series"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Communications in Computer and Information Science","raw_type":"book-chapter"},"type":"book-chapter","indexed_in":["crossref"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5058270594","display_name":"Alice Bernasconi","orcid":"https://orcid.org/0000-0001-8522-6882"},"institutions":[{"id":"https://openalex.org/I4210156707","display_name":"Fondazione IRCCS Istituto Nazionale dei Tumori","ror":"https://ror.org/05dwj7825","country_code":"IT","type":"healthcare","lineage":["https://openalex.org/I4210153126","https://openalex.org/I4210156707"]}],"countries":["IT"],"is_corresponding":true,"raw_author_name":"Alice Bernasconi","raw_affiliation_strings":["Evaluative Epidemiology Unit, Department of Epidemiology and Data Science, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy"],"raw_orcid":"https://orcid.org/0000-0001-8522-6882","affiliations":[{"raw_affiliation_string":"Evaluative Epidemiology Unit, Department of Epidemiology and Data Science, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy","institution_ids":["https://openalex.org/I4210156707"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5118458152","display_name":"Federico Pirola","orcid":null},"institutions":[{"id":"https://openalex.org/I66752286","display_name":"University of Milano-Bicocca","ror":"https://ror.org/01ynf4891","country_code":"IT","type":"education","lineage":["https://openalex.org/I66752286"]}],"countries":["IT"],"is_corresponding":false,"raw_author_name":"Federico Pirola","raw_affiliation_strings":["Models and Algorithms for Data and Text Mining Laboratory (MADLab), Department of Informatics, Systems and Communication (DISCo), University of Milano-Bicocca, Milan, Italy"],"raw_orcid":"https://orcid.org/0009-0000-7090-4716","affiliations":[{"raw_affiliation_string":"Models and Algorithms for Data and Text Mining Laboratory (MADLab), Department of Informatics, Systems and Communication (DISCo), University of Milano-Bicocca, Milan, Italy","institution_ids":["https://openalex.org/I66752286"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5030438727","display_name":"Alessio Zanga","orcid":"https://orcid.org/0000-0003-4423-2121"},"institutions":[{"id":"https://openalex.org/I4210156707","display_name":"Fondazione IRCCS Istituto Nazionale dei Tumori","ror":"https://ror.org/05dwj7825","country_code":"IT","type":"healthcare","lineage":["https://openalex.org/I4210153126","https://openalex.org/I4210156707"]},{"id":"https://openalex.org/I66752286","display_name":"University of Milano-Bicocca","ror":"https://ror.org/01ynf4891","country_code":"IT","type":"education","lineage":["https://openalex.org/I66752286"]}],"countries":["IT"],"is_corresponding":false,"raw_author_name":"Alessio Zanga","raw_affiliation_strings":["Evaluative Epidemiology Unit, Department of Epidemiology and Data Science, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy","Models and Algorithms for Data and Text Mining Laboratory (MADLab), Department of Informatics, Systems and Communication (DISCo), University of Milano-Bicocca, Milan, Italy"],"raw_orcid":"https://orcid.org/0000-0003-4423-2121","affiliations":[{"raw_affiliation_string":"Evaluative Epidemiology Unit, Department of Epidemiology and Data Science, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy","institution_ids":["https://openalex.org/I4210156707"]},{"raw_affiliation_string":"Models and Algorithms for Data and Text Mining Laboratory (MADLab), Department of Informatics, Systems and Communication (DISCo), University of Milano-Bicocca, Milan, Italy","institution_ids":["https://openalex.org/I66752286"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5120614656","display_name":"Antonio Balordi","orcid":"https://orcid.org/0009-0009-6710-8087"},"institutions":[{"id":"https://openalex.org/I4210114321","display_name":"Ministry of Defence","ror":"https://ror.org/02g6avh54","country_code":"IT","type":"government","lineage":["https://openalex.org/I4210114321"]}],"countries":["IT"],"is_corresponding":false,"raw_author_name":"Antonio Balordi","raw_affiliation_strings":["CASD - Italian Defense University, Rome, Italy"],"raw_orcid":"https://orcid.org/0009-0009-6710-8087","affiliations":[{"raw_affiliation_string":"CASD - Italian Defense University, Rome, Italy","institution_ids":["https://openalex.org/I4210114321"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":["https://openalex.org/A5058270594"],"corresponding_institution_ids":["https://openalex.org/I4210156707"],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.89430894,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":"126","last_page":"131"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12854","display_name":"Neurology and Historical Studies","score":0.050200000405311584,"subfield":{"id":"https://openalex.org/subfields/2808","display_name":"Neurology"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T12854","display_name":"Neurology and Historical Studies","score":0.050200000405311584,"subfield":{"id":"https://openalex.org/subfields/2808","display_name":"Neurology"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T12324","display_name":"History of Medicine Studies","score":0.03579999879002571,"subfield":{"id":"https://openalex.org/subfields/1202","display_name":"History"},"field":{"id":"https://openalex.org/fields/12","display_name":"Arts and Humanities"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11999","display_name":"Empathy and Medical Education","score":0.02539999969303608,"subfield":{"id":"https://openalex.org/subfields/2738","display_name":"Psychiatry and Mental health"},"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/drama","display_name":"Drama","score":0.8338000178337097},{"id":"https://openalex.org/keywords/medline","display_name":"MEDLINE","score":0.26159998774528503},{"id":"https://openalex.org/keywords/thesaurus","display_name":"Thesaurus","score":0.23119999468326569},{"id":"https://openalex.org/keywords/rare-disease","display_name":"Rare disease","score":0.22949999570846558}],"concepts":[{"id":"https://openalex.org/C523419034","wikidata":"https://www.wikidata.org/wiki/Q25372","display_name":"Drama","level":2,"score":0.8338000178337097},{"id":"https://openalex.org/C124952713","wikidata":"https://www.wikidata.org/wiki/Q8242","display_name":"Literature","level":1,"score":0.5015000104904175},{"id":"https://openalex.org/C142362112","wikidata":"https://www.wikidata.org/wiki/Q735","display_name":"Art","level":0,"score":0.4253000020980835},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3003999888896942},{"id":"https://openalex.org/C95457728","wikidata":"https://www.wikidata.org/wiki/Q309","display_name":"History","level":0,"score":0.296099990606308},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.26159998774528503},{"id":"https://openalex.org/C41895202","wikidata":"https://www.wikidata.org/wiki/Q8162","display_name":"Linguistics","level":1,"score":0.25780001282691956},{"id":"https://openalex.org/C2778698081","wikidata":"https://www.wikidata.org/wiki/Q179797","display_name":"Thesaurus","level":2,"score":0.23119999468326569},{"id":"https://openalex.org/C2779701055","wikidata":"https://www.wikidata.org/wiki/Q929833","display_name":"Rare disease","level":3,"score":0.22949999570846558},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.22499999403953552}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.1007/978-3-032-16708-8_11","is_oa":false,"landing_page_url":"https://doi.org/10.1007/978-3-032-16708-8_11","pdf_url":null,"source":{"id":"https://openalex.org/S2764900261","display_name":"Communications in computer and information science","issn_l":"1865-0929","issn":["1865-0929","1865-0937"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319900","host_organization_name":"Springer Science+Business Media","host_organization_lineage":["https://openalex.org/P4310319900","https://openalex.org/P4310319965"],"host_organization_lineage_names":["Springer Science+Business Media","Springer Nature"],"type":"book series"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Communications in Computer and Information Science","raw_type":"book-chapter"},{"id":"pmh:oai:boa.unimib.it:10281/603421","is_oa":false,"landing_page_url":"https://hdl.handle.net/10281/603421","pdf_url":null,"source":{"id":"https://openalex.org/S4306401259","display_name":"BOA (University of Milano-Bicocca)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I66752286","host_organization_name":"University of Milano-Bicocca","host_organization_lineage":["https://openalex.org/I66752286"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"info:eu-repo/semantics/conferenceObject"}],"best_oa_location":null,"sustainable_development_goals":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":8,"referenced_works":["https://openalex.org/W1994094188","https://openalex.org/W2143891888","https://openalex.org/W2298329032","https://openalex.org/W2466989778","https://openalex.org/W2474667434","https://openalex.org/W3197648598","https://openalex.org/W4403693298","https://openalex.org/W4403873580"],"related_works":[],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-05-03T08:25:01.440150","created_date":"2026-04-23T00:00:00"}