{"id":"https://openalex.org/W4407976413","doi":"https://doi.org/10.1016/j.jtct.2025.01.554","title":"Understanding the Patient Experience and Potential Barriers to Enrollment and Participation in Cell and Gene Therapy Trials in AML","display_name":"Understanding the Patient Experience and Potential Barriers to Enrollment and Participation in Cell and Gene Therapy Trials in AML","publication_year":2025,"publication_date":"2025-02-01","ids":{"openalex":"https://openalex.org/W4407976413","doi":"https://doi.org/10.1016/j.jtct.2025.01.554"},"language":"en","primary_location":{"id":"doi:10.1016/j.jtct.2025.01.554","doi":"https://doi.org/10.1016/j.jtct.2025.01.554","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jtct.2025.01.554","pdf_url":null,"source":{"id":"https://openalex.org/S59987174","display_name":"Transplantation and Cellular Therapy","issn_l":"1083-8791","issn":["1083-8791","1523-6536","2666-6367"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","poland-20","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Transplantation and Cellular Therapy","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.1016/j.jtct.2025.01.554","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5116431998","display_name":"AiThi Sprinkle","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"AiThi Sprinkle","raw_affiliation_strings":["Vor Bio, Cambridge, MA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Vor Bio, Cambridge, MA","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5050948792","display_name":"Christa Kerkorian","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4405264990","display_name":"Day One Biopharmaceuticals (United States)","ror":"https://ror.org/03hz16t86","country_code":"US","type":"company","lineage":["https://openalex.org/I4405264990"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Christa Kerkorian","raw_affiliation_strings":["Day One Bio, Brisbane, CA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Day One Bio, Brisbane, CA","institution_ids":["https://openalex.org/I4405264990"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5116432000","display_name":"Ms. Cali Semeatu","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2801024494","display_name":"HCA Healthcare","ror":"https://ror.org/0237c2m81","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2801024494"]},{"id":"https://openalex.org/I4210088104","display_name":"Centennial Medical Center","ror":"https://ror.org/001be0c19","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210088104"]},{"id":"https://openalex.org/I4210100810","display_name":"Sarah Cannon","ror":"https://ror.org/014t21j89","country_code":"US","type":"facility","lineage":["https://openalex.org/I4210100810"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Ms. Cali Semeatu","raw_affiliation_strings":["Sarah Cannon Transplant and Cellular Therapy Program at TriStar Centennial Medical Center, HCA Healthcare, Nashville, TN"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Sarah Cannon Transplant and Cellular Therapy Program at TriStar Centennial Medical Center, HCA Healthcare, Nashville, TN","institution_ids":["https://openalex.org/I2801024494","https://openalex.org/I4210088104","https://openalex.org/I4210100810"]}]},{"author_position":"middle","author":{"id":null,"display_name":"Allison Rodriguez","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Allison Rodriguez","raw_affiliation_strings":["Miami Cancer Institute, Miami, FL"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Miami Cancer Institute, Miami, FL","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5011255236","display_name":"Violeta Uy","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1316902750","display_name":"Cleveland Clinic","ror":"https://ror.org/03xjacd83","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1316902750"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Violeta Uy","raw_affiliation_strings":["Cleveland Clinic, Cleveland, OH"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Cleveland Clinic, Cleveland, OH","institution_ids":["https://openalex.org/I1316902750"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5116432002","display_name":"Ezequiel Kuperman","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Ezequiel Kuperman","raw_affiliation_strings":["Miami Cancer Institute, Miami, FL"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Miami Cancer Institute, Miami, FL","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5089274301","display_name":"Eyal C. Attar","orcid":"https://orcid.org/0000-0002-1959-8079","observed_orcids":["https://orcid.org/0000-0002-1959-8079"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Eyal Attar","raw_affiliation_strings":["Vor Bio, Cambridge, MA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Vor Bio, Cambridge, MA","institution_ids":[]}]},{"author_position":"last","author":{"id":null,"display_name":"Darren Johnson","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Darren Johnson","raw_affiliation_strings":["Vor Bio, Cambridge, MA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Vor Bio, Cambridge, MA","institution_ids":[]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3650,"currency":"USD","value_usd":3650},"apc_paid":{"value":3650,"currency":"USD","value_usd":3650},"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"31","issue":"2","first_page":"S359","last_page":"S360"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9829000234603882,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"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/T10582","display_name":"Ethics in Clinical Research","score":0.9829000234603882,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"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/T11491","display_name":"CAR-T cell therapy research","score":0.004900000058114529,"subfield":{"id":"https://openalex.org/subfields/2730","display_name":"Oncology"},"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/T13417","display_name":"Biomedical Ethics and Regulation","score":0.002899999963119626,"subfield":{"id":"https://openalex.org/subfields/2910","display_name":"Issues, ethics and legal aspects"},"field":{"id":"https://openalex.org/fields/29","display_name":"Nursing"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/cell-and-gene-therapy","display_name":"cell and gene therapy","score":0.8870000243186951},{"id":"https://openalex.org/keywords/acute-myeloid-leukemia","display_name":"acute myeloid leukemia","score":0.9599999785423279},{"id":"https://openalex.org/keywords/clinical-trial-enrollment","display_name":"clinical trial recruitment","score":0.8309999704360962},{"id":"https://openalex.org/keywords/barriers-to-clinical-trial-participation","display_name":"barriers to clinical trial participation","score":0.8730000257492065},{"id":"https://openalex.org/keywords/patient-experience","display_name":"patient experience","score":0.9990000128746033},{"id":"https://openalex.org/keywords/research-coordinators","display_name":"research coordinators","score":0.8349999785423279},{"id":"https://openalex.org/keywords/social-workers","display_name":"social workers","score":0.9350000023841858},{"id":"https://openalex.org/keywords/psychosocial-barriers","display_name":"psychosocial barriers","score":0.7549999952316284},{"id":"https://openalex.org/keywords/financial-burden","display_name":"financial burden","score":0.7979999780654907},{"id":"https://openalex.org/keywords/car-t-cell-therapy","display_name":"CAR T-cell therapy","score":0.640999972820282},{"id":"https://openalex.org/keywords/caregiver-concerns","display_name":"caregiver concerns","score":0.5870000123977661},{"id":"https://openalex.org/keywords/access-to-clinical-trials","display_name":"clinical trial access","score":0.8149999976158142}],"concepts":[{"id":"https://openalex.org/C111599444","wikidata":"https://www.wikidata.org/wiki/Q213901","display_name":"Genetic enhancement","level":3,"score":0.46369847655296326},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.401763916015625},{"id":"https://openalex.org/C104317684","wikidata":"https://www.wikidata.org/wiki/Q7187","display_name":"Gene","level":2,"score":0.223268061876297},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.19514703750610352},{"id":"https://openalex.org/C54355233","wikidata":"https://www.wikidata.org/wiki/Q7162","display_name":"Genetics","level":1,"score":0.14974519610404968}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.jtct.2025.01.554","doi":"https://doi.org/10.1016/j.jtct.2025.01.554","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jtct.2025.01.554","pdf_url":null,"source":{"id":"https://openalex.org/S59987174","display_name":"Transplantation and Cellular Therapy","issn_l":"1083-8791","issn":["1083-8791","1523-6536","2666-6367"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","poland-20","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Transplantation and Cellular Therapy","raw_type":"journal-article"}],"best_oa_location":{"id":"doi:10.1016/j.jtct.2025.01.554","doi":"https://doi.org/10.1016/j.jtct.2025.01.554","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jtct.2025.01.554","pdf_url":null,"source":{"id":"https://openalex.org/S59987174","display_name":"Transplantation and Cellular Therapy","issn_l":"1083-8791","issn":["1083-8791","1523-6536","2666-6367"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","poland-20","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Transplantation and Cellular Therapy","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.9537000060081482,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"study_designs":[{"display_name":"Observational Study","id":"https://openalex.org/study-designs/observational-study"}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4393255697","https://openalex.org/W2889659184","https://openalex.org/W4223526017","https://openalex.org/W2906371782","https://openalex.org/W3138645123","https://openalex.org/W7127385269","https://openalex.org/W4402708991","https://openalex.org/W4412443465","https://openalex.org/W2593056712","https://openalex.org/W4389228052"],"abstract_inverted_index":{"Introduction":[0],"Cell":[1],"and":[2,8,23,66,80,99,105,120,132,141,148,160,171,219,265,280,299,361,382,384,387],"gene":[3,24,121],"therapies":[4,203],"(CGT)":[5],"are":[6,179,199],"new":[7],"emerging":[9],"treatments":[10],"in":[11,32,40,73,124,204,420],"oncology":[12],".":[13,206],"Unlike":[14],"traditional":[15],"trials,":[16,154,331],"CGT":[17,153,174,230,294,321,394],"involves":[18],"complex":[19],"mechanisms":[20],"involving":[21],"cell":[22,119],"modification,":[25],"which":[26,222],"can":[27,401],"impact":[28],"the":[29,85,129,226,258,275,297,307,311,326,339,348,374,404],"patient":[30,86,155,363],"experience":[31],"unique":[33],"ways.":[34],"This":[35,314],"inherent":[36],"complexity":[37,340],"may":[38,164,305,333],"result":[39],"lack":[41],"of":[42,250,310,325,341,376,406],"understanding,":[43],"emotional":[44],"concerns,":[45,156],"logistical":[46,386],"barriers,":[47,260],"or":[48,178,252],"various":[49],"other":[50],"issues":[51,162],"that":[52,117,163,236,263,287,318,390,411],"affect":[53],"a":[54,70,96,186,194,270,293],"patient's":[55],"willingness":[56],"to":[57,126,135,146,151,158,182,185,229,274,292,302,338,354,378,393,409,418],"participate.":[58],"Clinical":[59],"trial":[60,136,166,196,231,295],"site":[61],"staff,":[62],"including":[63],"social":[64,109,284,359],"workers":[65,110,256,285,360],"research":[67,103,353],"coordinators/nurses,":[68],"play":[69,269],"key":[71,370],"role":[72,272],"supporting":[74],"patients":[75,237,288,319,381,414],"from":[76,368],"enrollment":[77],"through":[78],"treatment":[79,112],"offer":[81,118],"valuable":[82],"insights":[83,367],"into":[84],"experience.":[87],"Method":[88],"In":[89],"this":[90],"initial":[91],"pilot":[92,315],"study,":[93],"we":[94,400],"conducted":[95],"multiple-choice":[97,139],"survey":[98,140],"interviews":[100,106,142,356],"with":[101,107,248,357],"seven":[102],"coordinators/nurses":[104],"two":[108],"at":[111],"centers":[113],"across":[114],"North":[115],"America":[116],"therapy":[122],"trials":[123,175,322,422],"AML":[125,205],"learn":[127],"about":[128,240,290],"patients\u2019":[130],"experiences":[131],"potential":[133],"barriers":[134,157,228,328,389],"enrollment.":[137,232],"The":[138],"included":[143,213],"questions":[144],"related":[145],"time":[147,300],"resources":[149,377],"required":[150],"explain":[152,183],"enrollment,":[159],"psychosocial":[161,264],"hinder":[165],"participation.":[167],"Results":[168],"Most":[169],"coordinators":[170],"nurses":[172],"believe":[173],"take":[176],"longer":[177],"more":[180,358,412],"difficult":[181],"compared":[184,247],"non-CGT":[187,253,330],"trial.":[188,312],"One":[189,233],"participant":[190],"reported":[191],"difficulty":[192],"explaining":[193],"CAR-T":[195],"as":[197,225,329],"there":[198],"no":[200],"similar,":[201],"approved":[202],"Additional":[207],"concerns":[208,267],"noted":[209,235,286],"by":[210],"most":[211],"respondents":[212],"side":[214],"effects":[215],",":[216],"extensive":[217],"follow-up,":[218],"financial":[220,298],"constraints,":[221],"were":[223],"identified":[224,257],"main":[227],"respondent":[234],"often":[238],"worry":[239,289],"increased":[241,276],"study":[242,316],"follow":[243],"up":[244],"demands":[245],"when":[246],"standard":[249],"care":[251,364],"trials.":[254,395],"Social":[255],"same":[259,327],"but":[261,332],"added":[262],"caregiver":[266],"also":[268],"significant":[271],"due":[273,337],"need":[277],"for":[278,350],"monitoring":[279],"extended":[281],"housing.":[282],"Both":[283],"committing":[291],"because":[296],"burden":[301],"their":[303],"family":[304],"outweigh":[306],"unknown":[308],"benefits":[309],"Conclusion":[313],"revealed":[317],"considering":[320],"encounter":[323],"many":[324],"face":[334],"additional":[335],"challenges":[336],"these":[342,369,398,424],"novel":[343],"therapies.":[344,426],"These":[345],"findings":[346],"lay":[347],"groundwork":[349],"expanding":[351],"our":[352],"conduct":[355],"broader":[362],"teams.":[365],"Gathering":[366],"stakeholders":[371],"will":[372],"facilitate":[373],"development":[375],"support":[379],"both":[380],"staff":[383],"address":[385],"socioeconomic":[388],"limit":[391],"access":[392],"By":[396],"overcoming":[397],"challenges,":[399],"potentially":[402],"improve":[403],"design":[405],"future":[407],"studies":[408],"ensure":[410],"eligible":[413],"have":[415],"equal":[416],"ability":[417],"participate":[419],"clinical":[421],"evaluating":[423],"advanced":[425]},"counts_by_year":[],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2025-02-27T00:00:00"}
