Establishing a core outcome set for autosomal dominant polycystic kidney disease : report of the Standardized Outcomes in Nephrology–Polycystic Kidney Disease (SONG-PKD) consensus workshop

Autor: Cho, Y., Tong, A., Craig, J.C., Mustafa, R.A., Chapman, A., Perrone, R.D., Ahn, C., Fowler, K., Torres, V., Gansevoort, R.T., Ong, A.C.M., Coolican, H., Tze-Wah Kao, J., Harris, T., Gutman, T., Shen, J.I., Viecelli, A.K., Johnson, D.W., Au, E., El-Damanawi, R., Logeman, C., Ju, A., Manera, K.E., Chonchol, M., Odland, D., Baron, D., Pei, Y., Sautenet, B., Rastogi, A., Sharma, A., Rangan, G.

The omission of outcomes that are of relevance to patients, clinicians and regulators across trials in autosomal dominant polycystic kidney disease (ADPKD) limits shared decision-making. The Standardized Outcomes in Nephrology – Polycystic Kidney D

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https://eprints.whiterose.ac.uk/164533/1/SONGPKD_Workshop_AJKD_2020ccepted.pdf

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Establishing a Core Outcome Set for Autosomal Dominant Polycystic Kidney Disease: Report of the Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) Consensus Workshop.

Autor: Cho Y; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Australia; Translational Research Institute, Brisbane, Australia. Electronic address: yeoungjee.cho@health.qld.gov.au., Tong A; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Craig JC; College of Medicine and Public Health, Flinders University, Adelaide, Australia., Mustafa RA; Division of Nephrology and Hypertension, Department of Internal Medicine, University of Kansas Medical Center, Kansas City, KS., Chapman A; Department of Medicine, The University of Chicago, Chicago, IL., Perrone RD; Division of Nephrology, Tufts Medical Center, Tufts University School of Medicine Boston, MA., Ahn C; Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea., Fowler K; The Voice of the Patient, Inc, Seattle, WA., Torres V; Department of Nephrology and Hypertension, Mayo Clinic, Rochester, MN., Gansevoort RT; Faculty of Medical Sciences, University Medical Center, Gronigen, the Netherlands., Ong ACM; Academic Nephrology Unit, Department of Infection Immunity & Cardiovascular Disease, University of Sheffield, Sheffield, United Kingdom., Coolican H; Polycystic Kidney Disease Australia, Sydney, Australia., Tze-Wah Kao J; School of Medicine, Fu Jen Catholic University and Fu Jen Catholic University Hospital, Taipei City, Taiwan; Department of Internal Medicine, National Taiwan University Hospital, Taipei, Taiwan., Harris T; Polycystic Kidney Disease International, Geneva, Switzerland., Gutman T; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Shen JI; Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA., Viecelli AK; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Australia., Johnson DW; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Australia; Translational Research Institute, Brisbane, Australia., Au E; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., El-Damanawi R; Division of Experimental Medicine and Immunotherapeutics, Department of Medicine, University of Cambridge, Cambridge, United Kingdom; Cambridge Clinical Trials Unit, Addenbrooke's Hospital, Cambridge, United Kingdom., Logeman C; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Ju A; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Manera KE; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Chonchol M; School of Medicine, Renal Diseases and Hypertension, University of Colorado, Denver, CO., Odland D; Polycystic Kidney Disease Foundation, Kansas City, MO., Baron D; Polycystic Kidney Disease Foundation, Kansas City, MO., Pei Y; Division of Nephrology, University of Toronto, Toronto, Canada; Division of Genomic Medicine, University of Toronto, Toronto, Canada., Sautenet B; Department of Nephrology, Hypertension, Dialysis, Kidney Transplantation, Tours Hospital, SPHERE-INSERM 1246, University of Tours and Nantes, Tours, France., Rastogi A; Division of Nephrology, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, CA., Sharma A; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney; Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia., Rangan G; Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia; Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Sydney, Australia.

Publikováno v: American journal of kidney diseases : the official journal of the National Kidney Foundation [Am J Kidney Dis] 2021 Feb; Vol. 77 (2), pp. 255-263. Date of Electronic Publication: 2020 Aug 06.