{"id":"https://openalex.org/W4200218443","doi":"https://doi.org/10.2215/cjn.15001121","title":"Trial Outcomes in Glomerular Diseases","display_name":"Trial Outcomes in Glomerular Diseases","publication_year":2021,"publication_date":"2021-12-30","ids":{"openalex":"https://openalex.org/W4200218443","doi":"https://doi.org/10.2215/cjn.15001121","pmid":"https://pubmed.ncbi.nlm.nih.gov/34969700"},"language":"en","primary_location":{"id":"doi:10.2215/cjn.15001121","doi":"https://doi.org/10.2215/cjn.15001121","is_oa":false,"landing_page_url":"https://doi.org/10.2215/cjn.15001121","pdf_url":null,"source":{"id":"https://openalex.org/S184267533","display_name":"Clinical Journal of the American Society of Nephrology","issn_l":"1555-9041","issn":["1555-9041","1555-905X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","doyens","jufo-2","ki-jl-2","medline","norway-2"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Clinical Journal of the American Society of Nephrology","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/8763159","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":null,"display_name":"Jonathan P. Troost","orcid":"https://orcid.org/0000-0002-1183-8330","observed_orcids":["https://orcid.org/0000-0002-1183-8330"]},"institutions":[{"id":"https://openalex.org/I27837315","display_name":"University of Michigan","ror":"https://ror.org/00jmfr291","country_code":"US","type":"education","lineage":["https://openalex.org/I27837315"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Jonathan P. Troost","raw_affiliation_strings":["Michigan Institute for Clinical and Health Research, University of Michigan, Ann Arbor, Michigan"],"raw_orcid":"https://orcid.org/0000-0002-1183-8330","affiliations":[{"raw_affiliation_string":"Michigan Institute for Clinical and Health Research, University of Michigan, Ann Arbor, Michigan","institution_ids":["https://openalex.org/I27837315"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":[],"corresponding_institution_ids":["https://openalex.org/I27837315"],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.22953451,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"17","issue":"1","first_page":"11","last_page":"13"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11235","display_name":"Statistical Methods in Clinical Trials","score":0.7378000020980835,"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":0.7378000020980835,"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/T11029","display_name":"Renal Diseases and Glomerulopathies","score":0.14110000431537628,"subfield":{"id":"https://openalex.org/subfields/2727","display_name":"Nephrology"},"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/T12443","display_name":"Delphi Technique in Research","score":0.04149999842047691,"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/glomerular-disease","display_name":"glomerular disease","score":0.968999981880188},{"id":"https://openalex.org/keywords/core-outcome-set","display_name":"core outcome set","score":0.6729999780654907},{"id":"https://openalex.org/keywords/outcome-harmonization","display_name":"outcome harmonization","score":0.7620000243186951},{"id":"https://openalex.org/keywords/clinical-trial-endpoints","display_name":"clinical trial endpoints","score":0.6850000023841858},{"id":"https://openalex.org/keywords/patient-and-caregiver-perspectives","display_name":"patient and caregiver perspectives","score":0.5770000219345093},{"id":"https://openalex.org/keywords/delphi-method","display_name":"Delphi method","score":0.652999997138977},{"id":"https://openalex.org/keywords/focus-groups","display_name":"focus groups","score":0.5830000042915344},{"id":"https://openalex.org/keywords/patient-reported-outcomes","display_name":"patient-reported outcomes","score":0.4050000011920929},{"id":"https://openalex.org/keywords/proteinuria-remission","display_name":"proteinuria remission","score":0.6340000033378601},{"id":"https://openalex.org/keywords/estimated-glomerular-filtration-rate","display_name":"estimated glomerular filtration rate","score":0.7820000052452087},{"id":"https://openalex.org/keywords/basket-trials","display_name":"basket trials","score":0.4000000059604645},{"id":"https://openalex.org/keywords/platform-trials","display_name":"platform trials","score":0.8080000281333923},{"id":"https://openalex.org/keywords/trial-recruitment","display_name":"trial recruitment","score":0.31700000166893005},{"id":"https://openalex.org/keywords/glomerulonephritis","display_name":"glomerulonephritis","score":0.6610000133514404},{"id":"https://openalex.org/keywords/focal-segmental-glomerulosclerosis","display_name":"focal segmental glomerulosclerosis","score":0.8799999952316284}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9261999726295471},{"id":"https://openalex.org/C159641895","wikidata":"https://www.wikidata.org/wiki/Q108377937","display_name":"Renal function","level":2,"score":0.666700005531311},{"id":"https://openalex.org/C54847362","wikidata":"https://www.wikidata.org/wiki/Q177635","display_name":"Nephrology","level":2,"score":0.6104999780654907},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.5382000207901001},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.5080999732017517},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.498199999332428},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.48330000042915344},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.4000000059604645},{"id":"https://openalex.org/C2778653478","wikidata":"https://www.wikidata.org/wiki/Q1054718","display_name":"Kidney disease","level":2,"score":0.3677999973297119},{"id":"https://openalex.org/C168563851","wikidata":"https://www.wikidata.org/wiki/Q1436668","display_name":"Randomized controlled trial","level":2,"score":0.3382999897003174},{"id":"https://openalex.org/C2779561371","wikidata":"https://www.wikidata.org/wiki/Q570197","display_name":"Proteinuria","level":3,"score":0.3375999927520752},{"id":"https://openalex.org/C203092338","wikidata":"https://www.wikidata.org/wiki/Q1340863","display_name":"Clinical endpoint","level":3,"score":0.32089999318122864},{"id":"https://openalex.org/C2910856063","wikidata":"https://www.wikidata.org/wiki/Q909882","display_name":"Kidney Glomerulus","level":4,"score":0.2752000093460083},{"id":"https://openalex.org/C30036603","wikidata":"https://www.wikidata.org/wiki/Q17125150","display_name":"Severity of illness","level":2,"score":0.262800008058548},{"id":"https://openalex.org/C2780791683","wikidata":"https://www.wikidata.org/wiki/Q846785","display_name":"Action (physics)","level":2,"score":0.2572999894618988}],"mesh":[{"descriptor_ui":"D005921","descriptor_name":"Glomerulonephritis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D005921","descriptor_name":"Glomerulonephritis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D005921","descriptor_name":"Glomerulonephritis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D006801","descriptor_name":"Humans","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":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007674","descriptor_name":"Kidney Diseases","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D007674","descriptor_name":"Kidney Diseases","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D007674","descriptor_name":"Kidney Diseases","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D007674","descriptor_name":"Kidney Diseases","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D007674","descriptor_name":"Kidney Diseases","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D007674","descriptor_name":"Kidney Diseases","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D014551","descriptor_name":"Urinary Tract","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D014551","descriptor_name":"Urinary Tract","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D014551","descriptor_name":"Urinary Tract","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":3,"locations":[{"id":"doi:10.2215/cjn.15001121","doi":"https://doi.org/10.2215/cjn.15001121","is_oa":false,"landing_page_url":"https://doi.org/10.2215/cjn.15001121","pdf_url":null,"source":{"id":"https://openalex.org/S184267533","display_name":"Clinical Journal of the American Society of Nephrology","issn_l":"1555-9041","issn":["1555-9041","1555-905X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","doyens","jufo-2","ki-jl-2","medline","norway-2"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Clinical Journal of the American Society of Nephrology","raw_type":"journal-article"},{"id":"pmid:34969700","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/34969700","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":"Clinical journal of the American Society of Nephrology : CJASN","raw_type":"Editorial"},{"id":"pmh:oai:pubmedcentral.nih.gov:8763159","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/8763159","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":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Clin J Am Soc Nephrol","raw_type":"Text"}],"best_oa_location":{"id":"pmh:oai:pubmedcentral.nih.gov:8763159","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/8763159","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":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Clin J Am Soc Nephrol","raw_type":"Text"},"sustainable_development_goals":[{"score":0.9391000270843506,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"sustainable_development_goals_aurora":[],"study_designs":[],"awards":[{"id":"https://openalex.org/G467313275","display_name":null,"funder_award_id":"UL1 TR 002240","funder_id":"https://openalex.org/F4320337472","funder_display_name":"National Center for Advancing Translational Sciences"}],"funders":[{"id":"https://openalex.org/F4320337472","display_name":"National Center for Advancing Translational Sciences","ror":"https://ror.org/04pw6fb54"}],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":8,"referenced_works":["https://openalex.org/W2409751358","https://openalex.org/W2904077247","https://openalex.org/W2911341268","https://openalex.org/W2915080151","https://openalex.org/W2973459418","https://openalex.org/W3044576032","https://openalex.org/W4200029287","https://openalex.org/W4292806894"],"related_works":[],"abstract_inverted_index":{"In":[0],"this":[1,193,645,862,969,1036,1115,1135,1281],"issue":[2],"of":[3,17,22,26,118,156,223,235,271,321,370,381,390,588,639,669,674,751,757,842,858,907,944,1021,1117,1216,1283,1303,1319,1400],"CJASN,":[4],"the":[5,20,37,109,154,168,172,180,308,338,345,374,378,402,415,453,582,625,652,693,746,763,782,794,816,822,905,958,996,1009,1019,1026,1099,1111,1126,1130,1140,1148,1159,1214,1233,1299,1314,1338,1343,1353,1368,1374,1395,1429,1438],"Standardized":[6],"Outcomes":[7],"in":[8,64,125,145,179,243,355,368,409,442,446,459,554,815,828,885,1071,1080,1129,1194,1202,1274,1298,1305,1313,1373,1383,1426],"Nephrology":[9],"(SONG)":[10],"initiative":[11,317,824],"reports":[12],"results":[13],"from":[14,334,581,684,812,866],"a":[15,24,115,146,217,221,241,263,268,319,348,388,433,519,538,606,628,640,654,660,667,681,706,709,721,725,754,772,777,808,961,972,1038,1069,1078,1217,1238],"series":[16,320],"workshops":[18,326],"with":[19,143,165,220,249,327,506,651,899,957,1073,1411],"goal":[21,416],"identifying":[23],"set":[25,270,389,668,1102],"common":[27,269],"clinically":[28,1093],"meaningful":[29,555],"outcomes":[30,139,197,272,357,365,382,420,500,909,1201,1321],"across":[31,47,77,183,198,1290],"all":[32,275,398,410,424,460],"glomerular":[33,66,112,185,199,211,236,277,282,425,461,507,967,1291,1309],"diseases":[34,200,251,1292,1310],"(1).":[35],"For":[36,129,427,648,691],"nonclinical":[38],"trialist,":[39],"an":[40,204,803,931,951,989,1015,1360],"\u201coutcome\u201d":[41],"is":[42,44,79,123,737,1065,1084,1096,1125,1144,1278,1413,1424],"what":[43,589,875,1001,1412,1416],"being":[45,601,1220],"compared":[46],"treatment":[48],"arms":[49],"to":[50,136,141,149,160,206,229,274,299,361,397,418,423,438,456,552,574,597,603,605,659,687,744,759,770,780,796,806,831,839,850,855,873,935,966,992,1008,1046,1067,1087,1123,1138,1153,1204,1258,1267,1286,1295,1333,1407],"assess":[51,1334],"efficacy":[52],"and":[53,85,89,93,104,120,208,256,304,306,325,331,363,401,464,496,510,517,521,527,530,568,577,585,611,630,633,676,716,749,775,820,861,887,1033,1192,1209,1222,1224,1252,1263,1301,1308,1328,1346,1357,1362,1398,1415,1443],"safety":[54],"(e.g.,":[55,549,1359],"\u201cproteinuria":[56],"remission":[57],"status":[58],"at":[59,731,1134],"week":[60],"8\u201d":[61],"or":[62,468,713,727,896,900,949,1181],"\u201cchange":[63],"estimated":[65],"filtration":[67],"rate":[68],"by":[69,81,286,291,592,1004,1207,1348,1428],"month":[70],"12\u201d).":[71],"Carter":[72],"et":[73],"al.":[74],"suggest":[75,1198],"progress":[76],"trials":[78,83,246,284,1203,1254,1304],"stymied":[80],"different":[82,87,184,856],"reporting":[84,1289,1318],"analyzing":[86],"outcomes,":[88],"that":[90,225,393,405,513,643,790,920,937,1089,1098,1114,1147,1156,1161,1186,1225,1246,1280],"often":[91,679],"patients":[92,142,151,164,248,590,827,924,994,1013,1356],"caregivers":[94],"have":[95,880,927,1056,1268,1337,1391],"minimal":[96],"input":[97],"into":[98,1394],"which":[99,356,1120,1335],"endpoints":[100,1055,1160,1168,1188],"are":[101,176,259,358,366,525,533,537,665,837,910,999,1092,1158,1173,1242,1248],"most":[102,359,421,484,1354,1369],"important":[103,360,396,560,613,974,1086],"should":[105,1162,1189,1227],"be":[106,227,240,407,439,457,572,617,797,851,864,871,988,1108,1154,1163,1190,1205,1237,1331,1405],"studied.":[107],"On":[108,167],"one":[110,233,430],"hand,":[111,170],"disease":[113,212,283,462,491,529,532,894,1031],"represents":[114],"heterogenous":[116],"group":[117],"conditions":[119],"perhaps":[121,914,1199],"there":[122,175,238,536,1247],"value":[124],"using":[126,942],"disease-specific":[127],"outcomes.":[128,1106],"example,":[130,428,692,941],"it":[131,297,479,595,869,1064,1083,1226,1329],"would":[132,239,265,571,792,987,1377],"not":[133,191,452,471,615,729,1151],"seem":[134],"wrong":[135],"only":[137,161,881,1351],"use":[138],"relevant":[140,273,422,441,473,838],"FSGS":[144],"trial":[147,264],"limited":[148,720,724,730,1074],"such":[150,564,703,984],"(say,":[152],"if":[153,834,925,995],"method":[155,222],"action":[157,224],"was":[158,417,436,470,480],"thought":[159],"potentially":[162],"benefit":[163,242],"FSGS).":[166],"other":[169,787,1259,1275],"as":[171,253,429,472,478,558,565,704,985,1166,1388],"authors":[173,403,801,1112,1149],"argue,":[174],"many":[177,976],"similarities":[178],"patient":[181,1344],"experience":[182,1272],"diseases.":[186,278,426,978],"Even":[187],"though":[188],"they":[189,677,876,926,933,1002,1034,1174,1197,1389],"do":[190,936,1150,1419],"make":[192],"point":[194],"directly,":[195],"harmonizing":[196],"could":[201,226,1322],"also":[202,980,1085,1212,1323],"provide":[203],"opportunity":[205,991],"streamline":[207],"scale":[209],"up":[210],"trials.":[213,314,1195],"If":[214],"we":[215,791,915,1417],"had":[216],"potential":[218],"therapy":[219],"used":[228,814],"treat":[230],"more":[231,289,522,559,578,852,917,921],"than":[232,445,561,1060,1077,1273],"type":[234],"disease,":[237,508,968],"performing":[244],"\u201cpooled\u201d":[245],"where":[247,351,663],"multiple":[250],"(such":[252],"basket,":[254],"umbrella,":[255],"platform":[257],"trials)":[258],"enrolled":[260],"(2).":[261],"Such":[262],"likely":[266,1243],"require":[267],"included":[276,488,1165],"This":[279,739,1235],"can":[280,825,1236,1418],"improve":[281],"overall":[285],"making":[287,296,1175],"them":[288],"feasible":[290,1414],"bringing":[292],"similar":[293,1043],"populations":[294],"together,":[295,766],"easier":[298,1066],"reach":[300],"recruitment":[301],"enrollment":[302],"goals,":[303],"improving":[305],"streamlining":[307],"institutional":[309],"knowledge":[310],"needed":[311],"for":[312,466,474,481,627,940,960,975,1018,1030,1048,1169,1432,1437,1441],"successful":[313],"The":[315,384,483,621,800,1132],"SONG":[316,622,823],"conducted":[318],"in-person":[322],"focus":[323,742],"groups":[324,743],"patients,":[328],"care":[329],"partners,":[330],"health":[332,698],"professionals":[333],"19":[335],"countries":[336],"around":[337],"world.":[339],"Quantitative":[340],"analyses":[341,769],"were":[342,394,1137],"based":[343],"on":[344,680,930,1037,1232],"Delphi":[346],"method:":[347],"multistage/iterative":[349],"approach":[350],"participants":[352],"rank":[353],"order":[354,369],"them,":[362],"then":[364],"removed":[367],"lowest":[371,1339],"importance":[372,906,1215],"before":[373],"process":[375],"repeats":[376],"until":[377],"top":[379],"handful":[380],"emerge.":[383],"final":[385],"stage":[386,1136],"identified":[387,624],"\u201ccore":[391,486,1200],"outcomes\u201d":[392,487],"\u201ccritically":[395],"stakeholder":[399],"groups,\u201d":[400],"recommend":[404,1378],"these":[406,829,835,986,1157,1187,1387,1401,1409],"\u201creported":[408],"[glomerular":[411],"disease]":[412],"trials.\u201d":[413],"Again,":[414],"identify":[419,745,1113,1139],"might":[431,863],"expect,":[432],"relapse/remitting":[434],"pattern":[435],"found":[437],"less":[440,1269],"IgA":[443],"nephropathy":[444],"Minimal":[447,475],"Change":[448,476],"Disease":[449,477],"(and":[450],"thus":[451],"top-tiered":[454],"outcome":[455,890,1020,1101,1219],"reported":[458,1193],"trials),":[463],"\u201cneed":[465],"dialysis":[467],"transplant\u201d":[469],"IgA.":[482],"significant":[485],"kidney":[489,515],"function,":[490],"activity,":[492,1032],"death,":[493],"life":[494,524,556,962,1049],"participation,":[495],"cardiovascular":[497,531],"disease.":[498],"These":[499],"seemed":[501],"relatively":[502],"well":[503,762,911,1244],"expected.":[504],"Patients":[505,544],"caregivers,":[509],"providers":[511],"agree":[512],"better":[514],"function":[516],"living":[518],"longer":[520],"fulfilling":[523],"good,":[526],"active":[528],"bad.":[534],"Still,":[535,1196],"few":[539],"interesting":[540,573,872,1016],"themes":[541],"worth":[542,1145],"emphasizing.":[543],"consistently":[545],"described":[546,1014],"\u201clife":[547,809,843,867,1005,1010],"participation\u201d":[548,810,1011],"\u201cthe":[550],"ability":[551],"participate":[553],"activities\u201d)":[557],"individual":[562],"symptoms":[563],"edema,":[566],"fatigue,":[567],"anxiety.":[569],"It":[570,979,1095,1143,1277],"see":[575,874],"additional":[576],"nuanced":[579],"examples":[580],"interview":[583],"transcripts":[584],"meeting":[586],"notes":[587],"mean":[591,1003],"this,":[593],"but":[594,1211],"appears":[596],"be,":[598],"broadly":[599,1307],"speaking,":[600,1053],"able":[602,1406],"return":[604],"regular":[607],"routine,":[608],"enjoy":[609],"hobbies,":[610],"attend":[612],"events\u2014although":[614],"necessarily":[616],"completely":[618],"symptom":[619],"free.":[620],"team":[623],"need":[626,916,959],"standardized":[629,661,1288],"validated":[631,641],"instrument,":[632],"I":[634,636,845,954,1376],"agree;":[635],"am":[637],"unaware":[638],"instrument":[642,811,964],"measures":[644,813,891,919,1336],"concept":[646,841],"precisely.":[647],"readers":[649],"unfamiliar":[650],"term,":[653,1316],"\u201cvalidated":[655],"instrument\u201d":[656],"usually":[657],"refers":[658],"questionnaire":[662],"respondents":[664,717,758],"asked":[666],"questions":[670],"about":[671],"their":[672,840],"quality":[673,1300,1397],"life,":[675],"respond":[678],"\u201cLikert":[682],"scale,\u201d":[683],"\u201cstrongly":[685,688],"disagree\u201d":[686],"agree,\u201d":[689],"etc.":[690],"SF-36":[694],"asks,":[695],"\u201cDoes":[696],"your":[697],"now":[699],"limit":[700],"[moderate":[701],"activity":[702,895,932],"moving":[705],"table,":[707],"pushing":[708],"vacuum":[710],"cleaner,":[711],"bowling,":[712],"playing":[714],"golf?]\u201d":[715],"reply":[718],"\u201cyes,":[719,723],"lot,\u201d":[722],"little,\u201d":[726],"\u201cno,":[728],"all\u201d":[732],"(3).":[733],"Developing":[734],"new":[735],"instruments":[736,836,998],"cumbersome.":[738],"requires":[740],"(1)":[741],"right":[747],"content":[748],"wording":[750],"questions,":[752],"(2)":[753],"test":[755,760,779,784],"sample":[756,1075],"how":[761],"items":[764],"correlate":[765,781],"(3)":[767],"psychometric":[768],"develop":[771,807],"scoring":[773],"algorithm,":[774],"(4)":[776],"validation":[778],"finalized":[783],"scores":[785,795],"against":[786],"existing":[788,847,997],"instruments/measures":[789],"expect":[793],"correlated":[798],"with.":[799],"highlight":[802],"ongoing":[804],"effort":[805],"transplant":[817],"population":[818],"(4),":[819],"hopefully":[821],"leverage":[826],"meetings":[830,983,1385],"help":[832],"determine":[833],"participation.\u201d":[844,1006],"worry":[846],"surveys":[848],"look":[849],"closely":[853],"tailored":[854],"aspects":[857],"functional":[859],"independence,":[860],"distinct":[865],"participation\u201d;":[868],"will":[870,877,1350],"find.":[878],"We":[879],"observed":[882],"modest":[883],"differences":[884,1091],"global":[886],"physical":[888],"patient-reported":[889,908],"when":[892,1342],"comparing":[893,897],"those":[898,1047],"without":[901],"edema":[902],"(5,6).":[903],"Although":[904,953],"recognized":[912],"(7),":[913],"precise":[918],"directly":[922],"ask":[923,993],"missed":[928],"out":[929],"wanted":[934],"day":[938,945],"by,":[939],"end":[943],"assessments":[946],"via":[947],"text":[948],"through":[950],"app.":[952],"somewhat":[955],"disagree":[956],"participation":[963],"specific":[965,1121],"seems":[970,981],"like":[971,982,1386],"construct":[973],"chronic":[977],"excellent":[990],"capturing":[1000],"Similar":[1007],"issue,":[1012],"nuance":[1017],"\u201cdisease":[1022],"activity.\u201d":[1023],"They":[1024,1403],"eschewed":[1025],"usual":[1027],"\u201crelapse/remission\u201d":[1028],"dichotomy":[1029],"interpreted":[1035],"much":[1039],"broader":[1040],"continuum,":[1041],"creating":[1042],"measurement":[1044,1230],"issues":[1045],"participation.":[1050],"However,":[1051,1082,1312],"generally":[1052],"continuous":[1054,1090,1105],"greater":[1057],"statistical":[1058],"power":[1059],"categorical":[1061],"ones.":[1062],"Therefore,":[1063],"detect":[1068],"difference":[1070,1079],"means":[1072],"size":[1076],"frequencies/percentages.":[1081],"know":[1088],"important.":[1094],"convenient":[1097],"core":[1100,1218],"mostly":[1103],"identifies":[1104],"To":[1107],"clear":[1109],"though,":[1110],"level":[1116],"detail,":[1118],"determining":[1119],"measure":[1122],"use,":[1124],"next":[1127],"step":[1128],"initiative.":[1131],"goals":[1133],"key":[1141],"\u201cdomains.\u201d":[1142],"emphasizing":[1146],"appear":[1152],"suggesting":[1155],"explicitly":[1164],"primary":[1167],"drug":[1170],"approval.":[1171],"Nor":[1172],"distinctions":[1176],"between":[1177],"earlier":[1178],"phase":[1179,1183],"II":[1180],"later":[1182],"III":[1184],"trials\u2014just":[1185],"collected":[1191],"mandated":[1206],"funders":[1208],"regulators\u201d":[1210],"stress":[1213],"\u201ccheap\u201d":[1221],"\u201ceasy\u201d":[1223],"\u201cimpose":[1228],"little":[1229],"burden":[1231,1341],"patient.\u201d":[1234],"difficult":[1239,1332],"balance.":[1240],"Readers":[1241],"aware":[1245],"fewer":[1249],"clinical":[1250,1253,1270],"studies":[1251],"within":[1255],"nephrology":[1256,1306],"relative":[1257],"disciplines":[1260],"(8).":[1261],"Clinic":[1262],"research":[1264,1380],"staff":[1265,1382],"tend":[1266],"trial\u2013related":[1271],"disciplines.":[1276],"possible":[1279],"kind":[1282],"\u201cscaling":[1284],"up\u201d":[1285],"include":[1287,1352],"may":[1293,1330,1390,1404],"lead":[1294],"long-term":[1296],"improvements":[1297],"number":[1302],"specifically.":[1311],"short":[1315],"mandatory":[1317],"certain":[1320],"create":[1324],"extra":[1325],"administrative":[1326],"burden,":[1327],"response":[1340],"interviews":[1345],"meetings,":[1347],"design,":[1349],"motivated":[1355,1370],"researchers":[1358],"inherent":[1361],"almost":[1363],"unavoidable":[1364],"selection":[1365],"bias":[1366],"reflecting":[1367],"folks":[1371],"participating":[1372],"workshops).":[1375],"including":[1379],"study":[1381],"future":[1384],"unique":[1392],"insights":[1393],"data":[1396],"collection":[1399],"instruments.":[1402],"balance":[1408],"recommendations":[1410],"well.":[1420],"Disclosures":[1421],"J.":[1422],"Troost":[1423],"supported":[1425],"part":[1427],"National":[1430],"Center":[1431],"Advancing":[1433],"Translational":[1434],"Sciences":[1435],"(NCATS)":[1436],"Michigan":[1439],"Institute":[1440],"Clinical":[1442],"Health":[1444],"Research":[1445],"grant":[1446],"UL1TR002240.":[1447],"Funding":[1448],"None.":[1449]},"counts_by_year":[],"updated_date":"2026-08-21T09:56:20.448147","created_date":"2021-12-31T00:00:00"}