{"id":"https://openalex.org/W2042390728","doi":"https://doi.org/10.1007/s11606-014-2892-z","title":"Patient-Reported Outcomes in Clinical Trials of Rare Diseases","display_name":"Patient-Reported Outcomes in Clinical Trials of Rare Diseases","publication_year":2014,"publication_date":"2014-07-16","ids":{"openalex":"https://openalex.org/W2042390728","doi":"https://doi.org/10.1007/s11606-014-2892-z","mag":"2042390728","pmid":"https://pubmed.ncbi.nlm.nih.gov/25029974","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/4124120"},"language":"en","primary_location":{"id":"doi:10.1007/s11606-014-2892-z","doi":"https://doi.org/10.1007/s11606-014-2892-z","is_oa":true,"landing_page_url":"https://doi.org/10.1007/s11606-014-2892-z","pdf_url":"https://link.springer.com/content/pdf/10.1007%2Fs11606-014-2892-z.pdf","source":{"id":"https://openalex.org/S116608325","display_name":"Journal of General Internal Medicine","issn_l":"0884-8734","issn":["0884-8734","1525-1497"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"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":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of General Internal Medicine","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","datacite","pubmed"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"https://link.springer.com/content/pdf/10.1007%2Fs11606-014-2892-z.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5091400921","display_name":"Ethan Basch","orcid":"https://orcid.org/0000-0003-3813-9318","observed_orcids":["https://orcid.org/0000-0003-3813-9318"]},"institutions":[{"id":"https://openalex.org/I114027177","display_name":"University of North Carolina at Chapel Hill","ror":"https://ror.org/0130frc33","country_code":"US","type":"education","lineage":["https://openalex.org/I114027177"]},{"id":"https://openalex.org/I4390039329","display_name":"UNC Lineberger Comprehensive Cancer Center","ror":"https://ror.org/043ehm030","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I114027177","https://openalex.org/I4390039329"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Ethan Basch","raw_affiliation_strings":["Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, Department of Medicine, University of North Carolina, Chapel Hill, NC, USA, ebasch@med.unc.edu","Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, Department of Medicine, University of North Carolina, Chapel Hill, NC, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, Department of Medicine, University of North Carolina, Chapel Hill, NC, USA, ebasch@med.unc.edu","institution_ids":["https://openalex.org/I114027177","https://openalex.org/I4390039329"]},{"raw_affiliation_string":"Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, Department of Medicine, University of North Carolina, Chapel Hill, NC, USA","institution_ids":["https://openalex.org/I114027177","https://openalex.org/I4390039329"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5045265283","display_name":"Antonia Vickery Bennett","orcid":"https://orcid.org/0000-0002-8968-4511","observed_orcids":["https://orcid.org/0000-0002-8968-4511"]},"institutions":[{"id":"https://openalex.org/I114027177","display_name":"University of North Carolina at Chapel Hill","ror":"https://ror.org/0130frc33","country_code":"US","type":"education","lineage":["https://openalex.org/I114027177"]},{"id":"https://openalex.org/I4390039329","display_name":"UNC Lineberger Comprehensive Cancer Center","ror":"https://ror.org/043ehm030","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I114027177","https://openalex.org/I4390039329"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Antonia V. Bennett","raw_affiliation_strings":["Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, Department of Health Policy and Management, University of North Carolina, Chapel Hill, NC, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, Department of Health Policy and Management, University of North Carolina, Chapel Hill, NC, USA","institution_ids":["https://openalex.org/I114027177","https://openalex.org/I4390039329"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":["https://openalex.org/A5091400921"],"corresponding_institution_ids":["https://openalex.org/I114027177","https://openalex.org/I4390039329"],"apc_list":{"value":5290,"currency":"USD","value_usd":5290},"apc_paid":null,"fwci":2.9641,"has_fulltext":true,"cited_by_count":75,"citation_normalized_percentile":{"value":0.91718136,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":89,"max":99},"biblio":{"volume":"29","issue":"S3","first_page":"801","last_page":"803"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11235","display_name":"Statistical Methods in Clinical Trials","score":0.6826000213623047,"subfield":{"id":"https://openalex.org/subfields/2613","display_name":"Statistics and Probability"},"field":{"id":"https://openalex.org/fields/26","display_name":"Mathematics"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},"topics":[{"id":"https://openalex.org/T11235","display_name":"Statistical Methods in Clinical Trials","score":0.6826000213623047,"subfield":{"id":"https://openalex.org/subfields/2613","display_name":"Statistics and Probability"},"field":{"id":"https://openalex.org/fields/26","display_name":"Mathematics"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},{"id":"https://openalex.org/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.10279999673366547,"subfield":{"id":"https://openalex.org/subfields/2002","display_name":"Economics and Econometrics"},"field":{"id":"https://openalex.org/fields/20","display_name":"Economics, Econometrics and Finance"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T13117","display_name":"Health Education and Validation","score":0.0494999997317791,"subfield":{"id":"https://openalex.org/subfields/3304","display_name":"Education"},"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/patient-reported-outcomes","display_name":"patient-reported outcomes","score":1.0},{"id":"https://openalex.org/keywords/rare-diseases","display_name":"rare diseases","score":1.0},{"id":"https://openalex.org/keywords/clinical-trial-design","display_name":"clinical trial design","score":0.7279999852180481},{"id":"https://openalex.org/keywords/patient-experience","display_name":"patient experience","score":0.7919999957084656},{"id":"https://openalex.org/keywords/outcome-heterogeneity","display_name":"outcome heterogeneity","score":0.7649999856948853},{"id":"https://openalex.org/keywords/patient-reported-outcome-measures","display_name":"patient-reported outcome measures","score":0.609000027179718},{"id":"https://openalex.org/keywords/pediatric-population","display_name":"pediatric population","score":0.5320000052452087},{"id":"https://openalex.org/keywords/patient-associations","display_name":"patient associations","score":0.7120000123977661}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.8225969672203064},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.6165539622306824},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5208614468574524},{"id":"https://openalex.org/C2779701055","wikidata":"https://www.wikidata.org/wiki/Q929833","display_name":"Rare disease","level":3,"score":0.512078583240509},{"id":"https://openalex.org/C2779174308","wikidata":"https://www.wikidata.org/wiki/Q17092352","display_name":"Patient recruitment","level":3,"score":0.5005552768707275},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.4984273910522461},{"id":"https://openalex.org/C2779517570","wikidata":"https://www.wikidata.org/wiki/Q7144954","display_name":"Patient-reported outcome","level":3,"score":0.42155274748802185},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.3662259876728058},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.3209221065044403},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.20930373668670654},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.1731656789779663},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.1429990828037262},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D002986","descriptor_name":"Clinical Trials as Topic","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":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D063868","descriptor_name":"Patient Outcome Assessment","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":5,"locations":[{"id":"doi:10.1007/s11606-014-2892-z","doi":"https://doi.org/10.1007/s11606-014-2892-z","is_oa":true,"landing_page_url":"https://doi.org/10.1007/s11606-014-2892-z","pdf_url":"https://link.springer.com/content/pdf/10.1007%2Fs11606-014-2892-z.pdf","source":{"id":"https://openalex.org/S116608325","display_name":"Journal of General Internal Medicine","issn_l":"0884-8734","issn":["0884-8734","1525-1497"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"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":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of General Internal Medicine","raw_type":"journal-article"},{"id":"pmh:oai:pubmedcentral.nih.gov:4124120","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/4124120","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,"listed_in":[],"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":"J Gen Intern Med","raw_type":"Text"},{"id":"pmid:25029974","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/25029974","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,"listed_in":[],"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":"Journal of general internal medicine","raw_type":"Journal Article"},{"id":"pmh:cdr.lib.unc.edu:765378127","doi":null,"is_oa":true,"landing_page_url":"https://doi.org/10.17615/xkk1-jc97","pdf_url":"https://doi.org/10.17615/xkk1-jc97","source":{"id":"https://openalex.org/S4306401075","display_name":"Carolina Digital Repository (University of North Carolina at Chapel Hill)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I114027177","host_organization_name":"University of North Carolina at Chapel Hill","host_organization_lineage":["https://openalex.org/I114027177"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Journal of General Internal Medicine, 29(S3)","raw_type":"Article"},{"id":"doi:10.17615/xkk1-jc97","doi":"https://doi.org/10.17615/xkk1-jc97","is_oa":true,"landing_page_url":"https://doi.org/10.17615/xkk1-jc97","pdf_url":null,"source":{"id":"https://openalex.org/S7407051488","display_name":"UNC Libraries","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"article-journal"}],"best_oa_location":{"id":"doi:10.1007/s11606-014-2892-z","doi":"https://doi.org/10.1007/s11606-014-2892-z","is_oa":true,"landing_page_url":"https://doi.org/10.1007/s11606-014-2892-z","pdf_url":"https://link.springer.com/content/pdf/10.1007%2Fs11606-014-2892-z.pdf","source":{"id":"https://openalex.org/S116608325","display_name":"Journal of General Internal Medicine","issn_l":"0884-8734","issn":["0884-8734","1525-1497"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"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":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of General Internal Medicine","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.9763000011444092,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2042390728.pdf","grobid_xml":"https://content.openalex.org/works/W2042390728.grobid-xml"},"referenced_works_count":13,"referenced_works":["https://openalex.org/W1583257954","https://openalex.org/W1969958843","https://openalex.org/W1990681363","https://openalex.org/W2010465791","https://openalex.org/W2011964270","https://openalex.org/W2067847610","https://openalex.org/W2070309415","https://openalex.org/W2072456259","https://openalex.org/W2072805665","https://openalex.org/W2108903661","https://openalex.org/W2121743767","https://openalex.org/W2735351778","https://openalex.org/W2979321829"],"related_works":["https://openalex.org/W2517510982","https://openalex.org/W2735351778","https://openalex.org/W2806291669","https://openalex.org/W3031628127","https://openalex.org/W4311352551","https://openalex.org/W4311336174","https://openalex.org/W2766356879","https://openalex.org/W2921138927","https://openalex.org/W4399706475","https://openalex.org/W2893766396"],"abstract_inverted_index":null,"counts_by_year":[{"year":2026,"cited_by_count":3},{"year":2025,"cited_by_count":5},{"year":2024,"cited_by_count":10},{"year":2023,"cited_by_count":8},{"year":2022,"cited_by_count":12},{"year":2021,"cited_by_count":7},{"year":2020,"cited_by_count":7},{"year":2019,"cited_by_count":4},{"year":2018,"cited_by_count":10},{"year":2017,"cited_by_count":5},{"year":2016,"cited_by_count":1},{"year":2015,"cited_by_count":3}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}