Inconsistent, varied, and selective outcome reporting is problematic in localized renal cell cancer (RCC) research. Core outcome sets (COSs) offer a solution by defining a standardized minimum set of outcomes that should be measured and reported in all trials in a specific area of health or health care.
We aimed to develop a COS for localized RCC (L-RCC).
COS development was conducted over three phases. Phase 1 identified potentially relevant outcomes via a systematic review and patient interviews. In Phase 2, Phase 1 outcomes were entered into a 2-round online Delphi study, whereby patients, health care professionals (HCPs), and researchers scored each outcome's importance. In Phase 3, a series of meetings were conducted to reach a consensus on defining outcomes and selecting appropriate measurements.
Phase 1 identified 200 outcomes. The outcome list was deduplicated and refined before the Delphi study. Round one of the Delphi was completed by 168 participants, of whom 140 completed Round 2. The consensus meeting series was attended by 20 participants (HCPs, researchers, and patients). The L-RCC-COS consists of 21 agreed-upon outcomes, of which 10 apply to all treatments and 11 are intervention-specific. Consensus meeting participants were exclusively based in Europe; future validation work should determine if the L-RCC-COS outcomes are conceptually transferable to other languages and cultures.
There is a broad agreement from HCPs, researchers, and patients on which outcomes are important and how they should be defined in L-RCC. We developed the L-RCC-COS suitable for effectiveness trials, observational studies, and routine practice. Use of the L-RCC-COS to standardize outcome reporting in clinical trials and real-world evidence data collection will enable more precise and powerful evidence syntheses and reduce research waste.
European urology focus. 2026 Jul 01 [Epub ahead of print]
Ailbhe Lawlor, Mieke Van Hemelrijck, Charlotte Moss, Sheela Tripathee, Lisa M Wintner, Lorenzo Marconi, Axel Bex, Rachel H Giles, Rose Woodward, Saeed Dabestani, Luna van den Brink, Katharina Beyer, Emma Smith, Maria J Ribal, Riccardo Campi, Hannah Warren, Maxine Tran, Miles Walkden, Alexander Laird, Grant D Stewart, Tobias Klatte, Umberto Capitanio, Rakesh Heer, Christian Beisland, Stephanie E Bonn, Laurence Albiges, Patricia Zondervan, Steven MacLennan
Transforming cancer OUtcomes through Research (TOUR), King's College London, London, UK. Electronic address: ., Transforming cancer OUtcomes through Research (TOUR), King's College London, London, UK., Academic Urology Unit, Institute of Applied Health Sciences, University of Aberdeen, Aberdeen, UK., University Hospital of Psychiatry II, Medical University of Innsbruck, Innsbruck, Austria., Department of Urology, Coimbra University Hospital, Coimbra, Portugal., Specialist Centre for Kidney Cancer, Royal Free Hospital, London, UK., Von Hippel-Lindau Europa, Vlaardingen, The Netherlands., Action Kidney Cancer Charity, Manchester, UK., Department of Translational Medicine, Division of Urological Cancers, Lund University, Lund, Sweden., Department of Urology, Amsterdam University Medical Centers, Amsterdam, The Netherlands., Department of Urology, Erasmus MC Cancer Institute, Erasmus University Medical Centre, Rotterdam, The Netherlands., European Association of Urology (EAU) Guidelines Office, Arnhem, The Netherlands., European Association of Urology (EAU) Guidelines Office, Arnhem, The Netherlands; Uro-Oncology Unit, Hospital Clinic University of Barcelona, Barcelona, Spain., European Association of Urology (EAU) Young Academic Urologists (YAU) Renal Cancer Working Group, Arnhem, The Netherlands; Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy; Unit of Urology and Renal Transplantation, Careggi Hospital, Florence, Italy., Specialist Centre for Kidney Cancer, Royal Free Hospital, London, UK; Division of Surgery and Interventional Science University College London, London, UK., Division of Surgery and Interventional Science University College London, London, UK., Interventional Oncology Service, University College Hospital, London, UK., Urology Department, Western General Hospital, NHS Lothian, Edinburgh, UK; Institute of Genetics and Cancer, University of Edinburgh, Edinburgh, UK., Department of Surgery, School of Clinical Medicine, University of Cambridge, Cambridge, UK; Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK., Department of Urology, Helios Hospital Bad Saarow, Bad Saarow, Germany; Faculty of Health Sciences, Brandenburg Medical School Theodor Fontane, Brandenburg, Germany., Department of Urology, San Raffaele Scientific Institute, Milan, Italy; Division of Experimental Oncology/Unit of Urology, URI, IRCCS San Raffaele Hospital, Milan, Italy., Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Tyne and Wear, UK; Translational and Clinical Research Institute, NU Cancer, Newcastle upon Tyne, Tyne and Wear, UK., Department of Urology, Haukeland University Hospital, Bergen, Norway; Department of Clinical Medicine, University of Bergen, Bergen, Norway., Clinical Epidemiology Division, Department of Medicine Solna Karolinska Institutet, Stockholm, Sweden., Department of Cancer Medicine, Gustave Roussy Université Paris-Saclay, Villejuif, France.