{"id":"https://openalex.org/W7106548964","doi":"https://doi.org/10.6084/m9.figshare.30694685","title":"Supplementary data: Adherence, treatment utilization, clinical and economic outcomes of patients with sickle cell disease with recurrent vaso-occlusive crises treated with recently approved chronic therapies in the US","display_name":"Supplementary data: Adherence, treatment utilization, clinical and economic outcomes of patients with sickle cell disease with recurrent vaso-occlusive crises treated with recently approved chronic therapies in the US","publication_year":2025,"publication_date":"2025-11-24","ids":{"openalex":"https://openalex.org/W7106548964","doi":"https://doi.org/10.6084/m9.figshare.30694685"},"language":"en","primary_location":{"id":"pmh:oai:figshare.com:article/30694685","doi":null,"is_oa":true,"landing_page_url":"https://figshare.com/articles/dataset/Supplementary_data_Adherence_treatment_utilization_clinical_and_economic_outcomes_of_patients_with_sickle_cell_disease_with_recurrent_vaso-occlusive_crises_treated_with_recently_approved_chronic_therapies_in_the_US/30694685","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"Dataset"},"volume":null,"type":"supplementary-materials","is_traditional":false,"indexed_in":["datacite"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://figshare.com/articles/dataset/Supplementary_data_Adherence_treatment_utilization_clinical_and_economic_outcomes_of_patients_with_sickle_cell_disease_with_recurrent_vaso-occlusive_crises_treated_with_recently_approved_chronic_therapies_in_the_US/30694685","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":null,"display_name":"Udeze, Chuka","orcid":"https://orcid.org/0009-0002-7840-6804","observed_orcids":["https://orcid.org/0009-0002-7840-6804"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Udeze, Chuka","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0009-0002-7840-6804","affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5061451488","display_name":"Michelle Jerry","orcid":"https://orcid.org/0000-0003-1664-8090","observed_orcids":["https://orcid.org/0000-0003-1664-8090"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Jerry, Michelle","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0003-1664-8090","affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5101448411","display_name":"Kristin A. Evans","orcid":"https://orcid.org/0000-0003-0987-1745","observed_orcids":["https://orcid.org/0000-0003-0987-1745"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Evans, Kristin","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0003-0987-1745","affiliations":[]},{"author_position":"middle","author":{"id":null,"display_name":"Li, Nanxin","orcid":"https://orcid.org/0009-0000-4439-0176","observed_orcids":["https://orcid.org/0009-0000-4439-0176"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Li, Nanxin","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0009-0000-4439-0176","affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5103506391","display_name":"Siddharth V. Jain","orcid":"https://orcid.org/0009-0001-1579-4275","observed_orcids":["https://orcid.org/0009-0001-1579-4275"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Jain, Siddharth","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0009-0001-1579-4275","affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5088205989","display_name":"Biree Andemariam","orcid":"https://orcid.org/0000-0002-2540-6037","observed_orcids":["https://orcid.org/0000-0002-2540-6037"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Andemariam, Biree","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0002-2540-6037","affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.0,"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/T11620","display_name":"Medication Adherence and Compliance","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2714","display_name":"Family Practice"},"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/sickle-cell-disease","display_name":"sickle cell disease","score":1.0},{"id":"https://openalex.org/keywords/vaso-occlusive-crisis","display_name":"vaso-occlusive crisis","score":0.9580000042915344},{"id":"https://openalex.org/keywords/treatment-adherence","display_name":"medication adherence","score":0.8759999871253967},{"id":"https://openalex.org/keywords/glutamine","display_name":"glutamine","score":0.8450000286102295},{"id":"https://openalex.org/keywords/voxelotor","display_name":"voxelotor","score":0.9950000047683716},{"id":"https://openalex.org/keywords/crizanlizumab","display_name":"crizanlizumab","score":1.0},{"id":"https://openalex.org/keywords/health-care-costs","display_name":"health care costs","score":0.7329999804496765},{"id":"https://openalex.org/keywords/treatment-utilization","display_name":"treatment utilization","score":0.7699999809265137},{"id":"https://openalex.org/keywords/healthcare-resource-utilization","display_name":"healthcare resource utilization","score":0.6700000166893005},{"id":"https://openalex.org/keywords/payer-type","display_name":"payer type","score":0.6190000176429749},{"id":"https://openalex.org/keywords/medicaid","display_name":"Medicaid","score":0.7979999780654907},{"id":"https://openalex.org/keywords/private-insurance","display_name":"private insurance","score":0.9070000052452087},{"id":"https://openalex.org/keywords/proportion-of-days-covered","display_name":"proportion of days covered","score":0.8859999775886536},{"id":"https://openalex.org/keywords/long-term-treatment","display_name":"long-term treatment","score":0.6000000238418579},{"id":"https://openalex.org/keywords/real-world-outcomes","display_name":"real-world outcomes","score":0.6890000104904175},{"id":"https://openalex.org/keywords/economic-outcomes","display_name":"economic outcomes","score":0.6140000224113464}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9412000179290771},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5817999839782715},{"id":"https://openalex.org/C2776534028","wikidata":"https://www.wikidata.org/wiki/Q1141363","display_name":"Medicaid","level":3,"score":0.45739999413490295},{"id":"https://openalex.org/C2987552334","wikidata":"https://www.wikidata.org/wiki/Q383126","display_name":"Chronic disease","level":2,"score":0.453900009393692},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.3955000042915344},{"id":"https://openalex.org/C167135981","wikidata":"https://www.wikidata.org/wiki/Q2146302","display_name":"Retrospective cohort study","level":2,"score":0.3937000036239624},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.3804999887943268},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.37040001153945923},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.3402999937534332},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.33000001311302185},{"id":"https://openalex.org/C2780664029","wikidata":"https://www.wikidata.org/wiki/Q5282120","display_name":"Disease burden","level":3,"score":0.3197999894618988},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.28110000491142273},{"id":"https://openalex.org/C30036603","wikidata":"https://www.wikidata.org/wiki/Q17125150","display_name":"Severity of illness","level":2,"score":0.2709999978542328},{"id":"https://openalex.org/C2988170871","wikidata":"https://www.wikidata.org/wiki/Q11000047","display_name":"Healthcare system","level":3,"score":0.2678000032901764},{"id":"https://openalex.org/C38180746","wikidata":"https://www.wikidata.org/wiki/Q1952580","display_name":"Multivariate analysis","level":2,"score":0.266400009393692},{"id":"https://openalex.org/C194828623","wikidata":"https://www.wikidata.org/wiki/Q2861470","display_name":"Emergency medicine","level":1,"score":0.2655999958515167},{"id":"https://openalex.org/C524218345","wikidata":"https://www.wikidata.org/wiki/Q31218","display_name":"Health economics","level":3,"score":0.25540000200271606},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.250900000333786}],"mesh":[],"locations_count":3,"locations":[{"id":"pmh:oai:figshare.com:article/30694685","doi":null,"is_oa":true,"landing_page_url":"https://figshare.com/articles/dataset/Supplementary_data_Adherence_treatment_utilization_clinical_and_economic_outcomes_of_patients_with_sickle_cell_disease_with_recurrent_vaso-occlusive_crises_treated_with_recently_approved_chronic_therapies_in_the_US/30694685","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"Dataset"},{"id":"doi:10.6084/m9.figshare.30694685","doi":"https://doi.org/10.6084/m9.figshare.30694685","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.30694685","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"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":"Dataset"},{"id":"doi:10.6084/m9.figshare.30694685.v1","doi":"https://doi.org/10.6084/m9.figshare.30694685.v1","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.30694685.v1","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"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":"Dataset"}],"best_oa_location":{"id":"pmh:oai:figshare.com:article/30694685","doi":null,"is_oa":true,"landing_page_url":"https://figshare.com/articles/dataset/Supplementary_data_Adherence_treatment_utilization_clinical_and_economic_outcomes_of_patients_with_sickle_cell_disease_with_recurrent_vaso-occlusive_crises_treated_with_recently_approved_chronic_therapies_in_the_US/30694685","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"Dataset"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":1.0}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4416594881","https://openalex.org/W4405049301","https://openalex.org/W4399699808","https://openalex.org/W4306411793","https://openalex.org/W2043184343","https://openalex.org/W6964914414","https://openalex.org/W2811225905","https://openalex.org/W2189423951","https://openalex.org/W2476115757","https://openalex.org/W4400548232"],"abstract_inverted_index":{"These":[0],"are":[1],"peer-reviewed":[2],"supplementary":[3],"materials":[4],"for":[5,59,187,206,208,258,288,324,400,404],"the":[6,32,36,120,166,195,209,216,312,350,391,398],"article":[7],"'Adherence,":[8],"treatment":[9,95,177,402],"utilization,":[10,96,178],"clinical":[11],"and":[12,57,63,72,100,152,164,182,192,254,282,306,315,383],"economic":[13,101],"outcomes":[14,102],"of":[15,38,45,53,175,200,250,349,359,393],"patients":[16,60,104,129,157,223,259,277,289,301,325,405],"with":[17,21,26,61,105,110,114,130,132,261,279,290,303,406,408],"sickle":[18,106],"cell":[19,107],"disease":[20,108],"recurrent":[22,111,133,409],"vaso-occlusive":[23,97],"crises":[24,98],"treated":[25,113,260,278,302],"recently":[27,80,226,328,360],"approved":[28,81,227,329,361],"chronic":[29,82,168,211,228,330,362],"therapies":[30],"in":[31,35,103,119],"US'":[33],"published":[34],"Journal":[37],"Comparative":[39],"Effectiveness":[40],"Research.Supplemental":[41],"Table":[42,50,66,75,84],"1:":[43],"Number":[44,52,174],"VOCs":[46,54],"by":[47,70,79,88,333],"adherence":[48,71,374],"level.Supplemental":[49],"2:":[51],"at":[55],"baseline":[56,253,314],"follow-up":[58,218,255,316],"Medicaid":[62],"commercial":[64],"insurance.Supplemental":[65],"3:":[67],"Treatment":[68],"utilization":[69,181,310],"payer":[73,89],"type.Supplemental":[74],"4:":[76],"Healthcare":[77,86,308],"costs,":[78],"therapy.Supplemental":[83],"5:":[85],"costs":[87,184,323,352,387,392],"type.Aim:":[90],"To":[91],"describe":[92],"real-world":[93],"adherence,":[94],"(VOC)":[99],"(SCD)":[109],"VOC":[112,134,251],"L-glutamine,":[115,137,280,304,368],"voxelotor":[116,369],"or":[117,139,335,370],"crizanlizumab":[118,140,371],"US.":[121],"Materials":[122],"&":[123],"methods:":[124],"In":[125],"this":[126,273],"retrospective":[127],"study,":[128],"SCD":[131,407],"who":[135],"received":[136],"voxelotor,":[138,234,283],"were":[141,185,256,298,318,355],"identified":[142],"from":[143],"theMerative\u2122":[144],"MarketScan":[145],"Research":[146],"Databases":[147],"between":[148],"1":[149],"January":[150],"2015":[151],"30":[153],"September":[154],"2022.":[155],"Eligible":[156],"had":[158,372],"\u226512":[159],"months":[160,189],"continuous":[161],"enrollment":[162],"before":[163,190],"after":[165,193],"first":[167],"therapy":[169,212,229,264,293,331],"claim":[170],"(i.e.,":[171],"index":[172,196,210,263,292],"date).":[173],"VOC,":[176,382],"healthcare":[179,183,386],"resource":[180,309],"summarized":[186],"12":[188],"(baseline)":[191],"(follow-up)":[194],"date.":[197],"The":[198],"proportion":[199],"days":[201],"covered":[202],"(PDC;":[203],"i.e.,":[204],"proxy":[205],"adherence)":[207],"was":[213,274,294],"measured":[214],"during":[215,252,311,337],"12-month":[217,313],"period.":[219],"Results:":[220],"Overall,":[221],"440":[222],"initiated":[224,366],"a":[225,327,356],"(L-glutamine,":[230],"n":[231,235,239],"=":[232,236,240,266],"254;":[233],"110;":[237],"crizanlizumab,":[238,281,305],"76)":[241],"andmet":[242],"inclusion":[243],"criteria.":[244],"Mean":[245,285,320],"(standard":[246],"deviation":[247],"[SD])":[248],"number":[249],"similar":[257,275,299],"any":[262,291],"(n":[265],"440;":[267],"7.21":[268],"[8.82]":[269],"vs":[270],"7.27":[271],"[9.85]);":[272],"across":[276,300],"respectively.":[284],"(SD)":[286,321],"PDC":[287],"0.37":[295],"(0.29);":[296],"results":[297],"voxelotor.":[307],"periods":[317],"comparable.":[319],"total":[322],"initiating":[326],"increased":[332,351],"\u223c50%":[334],"$38,111":[336],"followup":[338],"(follow-up,":[339],"$118,235":[340],"[$177,125];":[341],"baseline,":[342],"$80,125":[343],"[$120,950];":[344],"p":[345],"<":[346],"0.001);":[347],"most":[348],"($27,108":[353],"[71.1%])":[354],"direct":[357],"result":[358],"therapies.":[363,395],"Conclusion:":[364],"Patients":[365],"on":[367,376],"low":[373],"(based":[375],"PDC),":[377],"continued":[378],"to":[379,390],"experience":[380],"frequent":[381],"incurred":[384],"higher":[385],"mostly":[388],"due":[389],"these":[394],"This":[396],"highlights":[397],"need":[399],"additional":[401],"options":[403],"VOC.":[410]},"counts_by_year":[],"updated_date":"2026-11-09T13:22:03.289127","created_date":"2025-11-25T00:00:00"}
