{"id":"https://openalex.org/W4205267746","doi":"https://doi.org/10.1109/bibm52615.2021.9669842","title":"Better Understand Rare Disease Patients\u2019 Needs by Analyzing Social Media Data \u2013 a Case Study of Cystic Fibrosis","display_name":"Better Understand Rare Disease Patients\u2019 Needs by Analyzing Social Media Data \u2013 a Case Study of Cystic Fibrosis","publication_year":2021,"publication_date":"2021-12-09","ids":{"openalex":"https://openalex.org/W4205267746","doi":"https://doi.org/10.1109/bibm52615.2021.9669842","pmid":"https://pubmed.ncbi.nlm.nih.gov/40988733"},"language":"en","primary_location":{"id":"doi:10.1109/bibm52615.2021.9669842","is_oa":false,"landing_page_url":"https://doi.org/10.1109/bibm52615.2021.9669842","pdf_url":null,"source":{"id":"https://openalex.org/S4363607735","display_name":"2021 IEEE International Conference on Bioinformatics and Biomedicine (BIBM)","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":"conference"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"2021 IEEE International Conference on Bioinformatics and Biomedicine (BIBM)","raw_type":"proceedings-article"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC12452168/","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5073074181","display_name":"Qian Zhu","orcid":"https://orcid.org/0000-0002-4858-6333"},"institutions":[{"id":"https://openalex.org/I4210148682","display_name":"National Center for Advancing Translational Sciences","ror":"https://ror.org/04pw6fb54","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210148682"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Qian Zhu","raw_affiliation_strings":["Division of Pre-Clinical Innovation, National Center for Advancing Translational Sciences, Rockville, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Pre-Clinical Innovation, National Center for Advancing Translational Sciences, Rockville, USA","institution_ids":["https://openalex.org/I4210148682"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5058424876","display_name":"Eric Sundstrom","orcid":null},"institutions":[{"id":"https://openalex.org/I919803642","display_name":"American Axle & Manufacturing (United States)","ror":"https://ror.org/00atq5220","country_code":"US","type":"company","lineage":["https://openalex.org/I919803642"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Eric Sundstrom","raw_affiliation_strings":["Axle Informatics Inc., Rockville, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Axle Informatics Inc., Rockville, USA","institution_ids":["https://openalex.org/I919803642"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5004924663","display_name":"Yanji Xu","orcid":"https://orcid.org/0000-0001-8033-3793"},"institutions":[{"id":"https://openalex.org/I4210148682","display_name":"National Center for Advancing Translational Sciences","ror":"https://ror.org/04pw6fb54","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210148682"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Yanji Xu","raw_affiliation_strings":["Office of Rare Disease Research, National Center for Advancing Translational Sciences, Bethesda, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Office of Rare Disease Research, National Center for Advancing Translational Sciences, Bethesda, USA","institution_ids":["https://openalex.org/I4210148682"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":2.0567,"has_fulltext":false,"cited_by_count":3,"citation_normalized_percentile":{"value":0.87169811,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":94},"biblio":{"volume":"2017","issue":null,"first_page":"2618","last_page":"2621"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12478","display_name":"Wikis in Education and Collaboration","score":0.9835000038146973,"subfield":{"id":"https://openalex.org/subfields/3315","display_name":"Communication"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},"topics":[{"id":"https://openalex.org/T12478","display_name":"Wikis in Education and Collaboration","score":0.9835000038146973,"subfield":{"id":"https://openalex.org/subfields/3315","display_name":"Communication"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T12027","display_name":"Social Media in Health Education","score":0.965399980545044,"subfield":{"id":"https://openalex.org/subfields/3306","display_name":"Health"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11147","display_name":"Misinformation and Its Impacts","score":0.9610999822616577,"subfield":{"id":"https://openalex.org/subfields/3312","display_name":"Sociology and Political Science"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/rare-disease","display_name":"Rare disease","score":0.8013319969177246},{"id":"https://openalex.org/keywords/social-media","display_name":"Social media","score":0.7497962117195129},{"id":"https://openalex.org/keywords/disease","display_name":"Disease","score":0.7429637312889099},{"id":"https://openalex.org/keywords/cystic-fibrosis","display_name":"Cystic fibrosis","score":0.5351423025131226},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.5224612951278687},{"id":"https://openalex.org/keywords/resource","display_name":"Resource (disambiguation)","score":0.43502119183540344},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.40052518248558044},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.32418859004974365},{"id":"https://openalex.org/keywords/pathology","display_name":"Pathology","score":0.2861112058162689},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.2200905680656433},{"id":"https://openalex.org/keywords/internal-medicine","display_name":"Internal medicine","score":0.14178290963172913}],"concepts":[{"id":"https://openalex.org/C2779701055","wikidata":"https://www.wikidata.org/wiki/Q929833","display_name":"Rare disease","level":3,"score":0.8013319969177246},{"id":"https://openalex.org/C518677369","wikidata":"https://www.wikidata.org/wiki/Q202833","display_name":"Social media","level":2,"score":0.7497962117195129},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.7429637312889099},{"id":"https://openalex.org/C2776938444","wikidata":"https://www.wikidata.org/wiki/Q178194","display_name":"Cystic fibrosis","level":2,"score":0.5351423025131226},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.5224612951278687},{"id":"https://openalex.org/C206345919","wikidata":"https://www.wikidata.org/wiki/Q20380951","display_name":"Resource (disambiguation)","level":2,"score":0.43502119183540344},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.40052518248558044},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.32418859004974365},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.2861112058162689},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.2200905680656433},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.14178290963172913},{"id":"https://openalex.org/C31258907","wikidata":"https://www.wikidata.org/wiki/Q1301371","display_name":"Computer network","level":1,"score":0.0}],"mesh":[],"locations_count":4,"locations":[{"id":"doi:10.1109/bibm52615.2021.9669842","is_oa":false,"landing_page_url":"https://doi.org/10.1109/bibm52615.2021.9669842","pdf_url":null,"source":{"id":"https://openalex.org/S4363607735","display_name":"2021 IEEE International Conference on Bioinformatics and Biomedicine (BIBM)","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":"conference"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"2021 IEEE International Conference on Bioinformatics and Biomedicine (BIBM)","raw_type":"proceedings-article"},{"id":"pmid:40988733","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/40988733","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":"Proceedings. IEEE International Conference on Bioinformatics and Biomedicine","raw_type":null},{"id":"pmh:oai:europepmc.org:11261543","is_oa":false,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/12452168","pdf_url":null,"source":{"id":"https://openalex.org/S4306400806","display_name":"Europe PMC (PubMed Central)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1303153112","host_organization_name":"European Bioinformatics Institute","host_organization_lineage":["https://openalex.org/I1303153112"],"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":"Text"},{"id":"pmh:oai:pubmedcentral.nih.gov:12452168","is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC12452168/","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":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Proceedings (IEEE Int Conf Bioinformatics Biomed)","raw_type":"Text"}],"best_oa_location":{"id":"pmh:oai:pubmedcentral.nih.gov:12452168","is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC12452168/","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":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Proceedings (IEEE Int Conf Bioinformatics Biomed)","raw_type":"Text"},"sustainable_development_goals":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":11,"referenced_works":["https://openalex.org/W2101746535","https://openalex.org/W2787330927","https://openalex.org/W2945564149","https://openalex.org/W2953320089","https://openalex.org/W2962686197","https://openalex.org/W3040523989","https://openalex.org/W3103412787","https://openalex.org/W3137512707","https://openalex.org/W3185713645","https://openalex.org/W3200790814","https://openalex.org/W6748210014"],"related_works":["https://openalex.org/W2748952813","https://openalex.org/W2067301453","https://openalex.org/W2334695114","https://openalex.org/W2316367627","https://openalex.org/W795876935","https://openalex.org/W4387746715","https://openalex.org/W3029629814","https://openalex.org/W2073898856","https://openalex.org/W2414453205","https://openalex.org/W2332557720"],"abstract_inverted_index":{"There":[0],"are":[1],"approximately":[2],"7,000":[3],"rare":[4,13,22,50,68,81,93,154],"diseases,":[5],"and":[6,45,63,72,115],"25-30":[7],"million":[8],"people":[9],"affected":[10],"with":[11],"a":[12,36,131,142],"disease":[14,32,51,94,155],"in":[15],"the":[16,113,121,128,147],"United":[17],"States.":[18],"Prevalence":[19],"rate":[20],"for":[21,48,60,153],"diseases":[23,69],"is":[24],"relatively":[25],"low":[26],"compared":[27],"to":[28,35,67,79,91,101,108,119,145],"common":[29],"diseases.":[30],"Thus,":[31],"rarity":[33],"leads":[34],"lack":[37],"of":[38,133,149],"clinical":[39],"familiarity":[40],"that":[41],"often":[42],"impedes":[43],"accurate":[44],"timely":[46],"diagnosis":[47],"many":[49],"patients.":[52],"Social":[53],"media":[54,89],"has":[55],"become":[56],"an":[57],"important":[58],"resource/tool":[59],"discussing,":[61],"sharing,":[62],"seeking":[64],"information":[65],"relevant":[66],"by":[70],"patients":[71],"families.":[73],"In":[74],"this":[75],"study,":[76],"we":[77,135],"aimed":[78],"analyze":[80],"disease-related":[82],"posts":[83,114],"from":[84,112,127,151],"Reddit,":[85],"one":[86],"popular":[87],"social":[88],"platform":[90],"reveal":[92],"patients'":[95],"needs":[96],"based":[97],"on":[98,138],"hidden":[99],"topics":[100,111],"be":[102],"identified.":[103],"We":[104],"implemented":[105],"NLP/topic":[106],"modelling":[107],"identify":[109],"main":[110],"consequently":[116],"computed":[117],"TF-IDF":[118],"detect":[120],"most":[122],"prevalent":[123],"phrases":[124],"as":[125,141],"sub-topics":[126],"posts.":[129],"As":[130],"proof":[132],"concept,":[134],"primarily":[136],"focused":[137],"Cystic":[139],"Fibrosis":[140],"case":[143],"study":[144],"demonstrate":[146],"use":[148],"data":[150],"Reddit":[152],"research.":[156]},"counts_by_year":[{"year":2024,"cited_by_count":1},{"year":2023,"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"}