{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,25]],"date-time":"2026-03-25T02:40:32Z","timestamp":1774406432973,"version":"3.50.1"},"reference-count":41,"publisher":"Oxford University Press (OUP)","issue":"5","license":[{"start":{"date-parts":[[2020,4,2]],"date-time":"2020-04-02T00:00:00Z","timestamp":1585785600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"name":"NHRMC"},{"name":"Translation in Chronic Kidney Disease"},{"name":"BEAT-CKD","award":["APP1092957"],"award-info":[{"award-number":["APP1092957"]}]},{"DOI":"10.13039\/501100000925","name":"NHMRC","doi-asserted-by":"publisher","award":["APP1106716"],"award-info":[{"award-number":["APP1106716"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"name":"NHMRC BEAT-CKD","award":["APP1092957"],"award-info":[{"award-number":["APP1092957"]}]},{"name":"NHMRC Fellowship","award":["APP1126256"],"award-info":[{"award-number":["APP1126256"]}]},{"name":"NHMRC Fellowship","award":["APP1117534"],"award-info":[{"award-number":["APP1117534"]}]},{"name":"Jacquot Research Establishment Fellowship"},{"name":"Princess Alexandra Research Foundation Grant"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,5,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Slow recruitment and poor retention jeopardize the reliability and statistical power of clinical trials, delaying access to effective interventions and increasing costs, as commonly observed in nephrology trials. Involving patients in trial design, recruitment and retention is infrequent but potentially transformational.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>We conducted three workshops involving 105 patients\/caregivers and 43 health professionals discussing patient recruitment and retention in clinical trials in chronic kidney disease.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>We identified four themes. \u2018Navigating the unknown\u2019\u2014patients described being unaware of the research question, confused by technical terms, sceptical about findings and feared the risk of harm. \u2018Wary of added burden\u2019\u2014patients voiced reluctance to attend additional appointments, were unsure of the commitment required or at times felt too unwell and without capacity to participate. \u2018Disillusioned and disconnected\u2019\u2014some patients felt they were taken for granted, particularly if they did not receive trial results. Participants believed there was no culture of trial participation in kidney disease and an overall lack of awareness about opportunities to participate. To improve recruitment and retention, participants addressed \u2018Building motivation and interest\u2019.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Investigators should establish research consciousness from the time of diagnosis, consider optimal timing for approaching patients, provide comprehensive information in an accessible manner, emphasize current and future relevance to them and their illness, involve trusted clinicians in recruitment and minimize the burden of trial participation. Participation in clinical trials was seen as an opportunity for people to give back to the health system and for future people in their predicament.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/ndt\/gfaa044","type":"journal-article","created":{"date-parts":[[2020,2,14]],"date-time":"2020-02-14T04:40:30Z","timestamp":1581655230000},"page":"755-764","source":"Crossref","is-referenced-by-count":31,"title":["Recruitment and retention in clinical trials in chronic kidney disease: report from national workshops with patients, caregivers and health professionals"],"prefix":"10.1093","volume":"35","author":[{"given":"Patrizia","family":"Natale","sequence":"first","affiliation":[{"name":"Sydney School of Public Health, University of Sydney, New South Wales, Sydney, Australia"},{"name":"Centre for Kidney Research, Children\u2019s Hospital at Westmead, New South Wales, Westmead, Australia"},{"name":"Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6341-8725","authenticated-orcid":false,"given":"Talia","family":"Gutman","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, University of Sydney, New South Wales, Sydney, Australia"},{"name":"Centre for Kidney Research, Children\u2019s Hospital at Westmead, New South Wales, Westmead, Australia"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9740-712X","authenticated-orcid":false,"given":"Martin","family":"Howell","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, University of Sydney, New South Wales, Sydney, Australia"},{"name":"Centre for Kidney Research, Children\u2019s Hospital at Westmead, New South Wales, Westmead, Australia"}]},{"given":"Kathryn","family":"Dansie","sequence":"additional","affiliation":[{"name":"Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute, Adelaide, South Australia, Australia"}]},{"given":"Carmel M","family":"Hawley","sequence":"additional","affiliation":[{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"},{"name":"Translational Research Institute, Brisbane, Queensland, Australia"},{"name":"Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia"}]},{"given":"Yeoungjee","family":"Cho","sequence":"additional","affiliation":[{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"},{"name":"Translational Research Institute, Brisbane, Queensland, Australia"},{"name":"Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia"}]},{"given":"Andrea K","family":"Viecelli","sequence":"additional","affiliation":[{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"},{"name":"Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia"}]},{"given":"Jonathan C","family":"Craig","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, University of Sydney, New South Wales, Sydney, Australia"},{"name":"Centre for Kidney Research, Children\u2019s Hospital at Westmead, New South Wales, Westmead, Australia"},{"name":"College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia"}]},{"given":"Shilpanjali","family":"Jesudason","sequence":"additional","affiliation":[{"name":"Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Adelaide, South Australia, Australia"},{"name":"Kidney Health Australia, Victoria, Melbourne, Australia"},{"name":"Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia"}]},{"given":"Jeremy R","family":"Chapman","sequence":"additional","affiliation":[{"name":"Westmead Clinical School, Westmead Institute for Medical Research, New South Wales, Westmead, Australia"}]},{"given":"David W","family":"Johnson","sequence":"additional","affiliation":[{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"},{"name":"Translational Research Institute, Brisbane, Queensland, Australia"},{"name":"Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia"}]},{"given":"Lisa","family":"Murphy","sequence":"additional","affiliation":[{"name":"Kidney Health Australia, Victoria, Melbourne, Australia"}]},{"given":"Donna","family":"Reidlinger","sequence":"additional","affiliation":[{"name":"Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia"},{"name":"Translational Research Institute, Brisbane, Queensland, Australia"}]},{"given":"Sally","family":"Crowe","sequence":"additional","affiliation":[{"name":"Crowe Associates Ltd, Oxford, UK"}]},{"given":"Emily","family":"Duncanson","sequence":"additional","affiliation":[{"name":"Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute, Adelaide, South Australia, Australia"}]},{"given":"Shyamsundar","family":"Muthuramalingam","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, University of Sydney, New South Wales, Sydney, Australia"},{"name":"Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute, Adelaide, South Australia, Australia"}]},{"given":"Nicole","family":"Scholes-Robertson","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, University of Sydney, New South Wales, Sydney, Australia"},{"name":"Centre for Kidney Research, Children\u2019s Hospital at Westmead, New South Wales, Westmead, Australia"}]},{"given":"Amber","family":"Williamson","sequence":"additional","affiliation":[{"name":"BEAT-CKD Consumer Advisory Board, Sydney, New South Wales, Australia"},{"name":"Kidney Health Australia, Queensland Consumer Consultative 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