As a global network, the IKCC is committed to addressing unmet needs for kidney cancer patients worldwide and to promoting evidence-based guidelines and quality care. As patient advocates, clinicians, patients, and caregivers, we are keen to collaborate with colleagues around the world on publications, guidelines, and patient materials.
2023 IKCC Publications
1. van Leeuwaarde RS, Ahmad S, van Nesselrooij B, Zandee W, Giles RH. Von Hippel-Lindau Syndrome. GeneReviews®. Seattle (WA): University of Washington, Seattle; 1993–2024.
2. MacLennan S, et al. A protocol for the development of core outcome sets for effectiveness trials and clinical audits in renal cell cancer (R-COS). BJUI Compass. 2023 Jun 28;4(5):504-512.
3. Krysiak K, et al. CIViCdb 2022: evolution of an open-access cancer variant interpretation knowledgebase. Nucleic Acids Res. 2023 Jan 6;51(D1):D1230-D1241.
4. Bedke J, et al. The 2022 Updated European Association of Urology Guidelines on the Use of Adjuvant Immune Checkpoint Inhibitor Therapy for Renal Cell Carcinoma. Eur Urol. 2023 Jan;83(1):10-14.
5. Capitanio U, et al. A Renewal of the TNM Staging System for Patients with Renal Cancer To Comply with Current Decision-making: Proposal from the European Association of Urology Guidelines Panel. Eur Urol. 2023 Mar;83(3):e74-e75.
6. Hora M, et al. European Association of Urology Guidelines Panel on Renal Cell Carcinoma Update on the New World Health Organization Classification of Kidney Tumours 2022: The Urologist’s Point of View. Eur Urol. 2023 Feb;83(2):97-100.
7. Booth CM, et al. Common Sense Oncology: outcomes that matter. Lancet Oncol. 2023 Aug;24(8):833-835.
8. Choueiri TK, Pal SK, Lewis B, Poteat S, Pels K, Hammers H. The 5th Kidney Cancer Research Summit: Research Accelerating Cures for Renal Cell Carcinoma in 2023. Oncologist. 2023 Dec 4:oyad322.
9. Addario B, et al. A New Framework for Co-Creating Telehealth for Cancer Care with the Patient Community. Patient. 2023 Sep;16(5):415-423
10. Daniels AB, et al. Guidelines for surveillance of patients with von Hippel-Lindau disease: Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance. Cancer. 2023 Oct 1;129(19):2927-2940.
11. Gatto F, et al. Plasma and Urine Free Glycosaminoglycans as Monitoring and Predictive Biomarkers in Metastatic Renal Cell Carcinoma: A Prospective Cohort Study. JCO Precis Oncol. 2023 Feb;7:e2200361..
12. Richard PO, et al. 2023 UPDATE – Canadian Urological Association guideline: Management of cystic renal lesions. Can Urol Assoc J. 2023 Jun;17(6):162-174.
13. Hasanov E, Jonasch E. Management of Brain Metastases in Metastatic Renal Cell Carcinoma. Hematol Oncol Clin North Am. 2023 Jun 1:S0889-8588(23)00054-0.
14. Jonasch E, et al. Epidemiology and Economic Burden of von Hippel-Lindau Disease-Associated Renal Cell Carcinoma in the United States. Clin Genitourin Cancer. 2023 Apr;21(2):238-247.
2022 IKCC Publications
1. A Systematic Review of Heterogeneity in Outcome Definition and Reporting in Localised Renal Cancer. Beyer K, Widdershoven C, Wintner LM, Dabestani S, Marconi L, Moss C, Kinsella N, Yuan Y, Giles RH, Barod R, Van Hemelrijck M, Bex A, Zondervan P, MacLennan S. Eur Urol Open Sci. 2022 Dec 15;48:1-11. doi: 10.1016/j.euros.2022.11.014. eCollection 2023 Feb. PMID: 36578462 Free PMC article. Review.
2. Reply to Yaxiong Tang, Xu Hu, Kan Wu, Yanxiang Shao, and Xiang Li’s Letter to the Editor re: Umberto Capitanio, Jens Bedke, Laurence Albiges, et al. A Renewal of the TNM Staging System for Patients with Renal Cancer To Comply with Current Decision-making: Proposal from the European Association of Urology Guidelines Panel. Eur Urol. 2022;83:3-5. Capitanio U, Bedke J, Albiges L, Volpe A, Giles RH, Hora M, Marconi L, Klatte T, Abu-Ghanem Y, Dabestani S, Fernández Pello S, Hofmann F, Kuusk T, Campi R, Tahbaz R, Powles T, Ljungberg B, Bex A. Eur Urol. 2022 Dec 14:S0302-2838(22)02846-9.
3. The 2022 Updated European Association of Urology Guidelines on the Use of Adjuvant Immune Checkpoint Inhibitor Therapy for Renal Cell Carcinoma. Bedke J, Albiges L, Capitanio U, Giles RH, Hora M, Ljungberg B, Marconi L, Klatte T, Volpe A, Abu-Ghanem Y, Dabestani S, Fernández-Pello S, Hofmann F, Kuusk T, Tahbaz R, Powles T, Bex A. Eur Urol. 2023 Jan;83(1):10-14.
4. European Association of Urology Guidelines Panel on Renal Cell Carcinoma Update on the New World Health Organization Classification of Kidney Tumours 2022: The Urologist’s Point of View. Hora M, et al. Eur Urol. 2022 Nov 23:S0302-2838(22)02788-9.
5. CIViCdb 2022: evolution of an open-access cancer variant interpretation knowledgebase. Krysiak K, et al. Nucleic Acids Res. 2022 Nov 14:gkac979.
6. A Renewal of the TNM Staging System for Patients with Renal Cancer To Comply with Current Decision-making: Proposal from the European Association of Urology Guidelines Panel. Capitanio U, et al. Eur Urol. 2022 Oct 14:S0302-2838(22)02703-8.
7. Reply to “von Hippel-Lindau disease integrated care pathway: Centralizing, expanding specialists’ theatre, and measuring improvement”. van Leeuwaarde RS, Wolters WPG, Dreijerink KMA, Giles RH. Cancer. Nov 15;128(22):4029.2022 Sep 28
8. An interdisciplinary consensus on the management of brain metastases in patients with renal cell carcinoma. Hasanov E, et al. CA Cancer J Clin. 2022 Sep;72(5):454-489.
9. A community approach to the cancer-variant-interpretation bottleneck. Krysiak K, et al. Nat Cancer. 2022 May;3(5):522-525.
10. Multidisciplinary integrated care pathway for von Hippel-Lindau disease. Wolters WPG, et al. Cancer. 2022 Aug 1;128(15):2871-2879. doi: 10.1002/cncr.34265.
11. Reply to “von Hippel-Lindau disease integrated care pathway: Centralizing, expanding specialists’ theatre, and measuring improvement”. van Leeuwaarde RS, Wolters WPG, Dreijerink KMA, Giles RH. Cancer. 2022 Sep 28
12. Patient-reported outcomes: what really matters to patients? Hasanov E, Caceres JOH, Maskens DA, Giles RH, Schmitt AM. Lancet Oncol. 2022 May;23(5):e198.
13. Large scale genotype- and phenotype-driven machine learning in Von Hippel-Lindau disease. Chiorean A, et al. Hum Mutat. 2022 Sep;43(9):1268-1285.
14. European Association of Urology Guidelines on Renal Cell Carcinoma: The 2022 Update. Ljungberg B, et al. Eur Urol. 2022 Oct;82(4):399-410
15. Co-creating with patients an impact framework across the medicine’s life cycle: a qualitative study exploring patients’ experiences of involvement in and perceptions of impact measures. Gorbenko O, Cavillon P, Giles RH, Kolarova T, Marks M, Cardone A, Bagga S, Nolan C. Res Involv Engagem. 2022 Feb 2;8(1):1.
16. 2021 Updated European Association of Urology Guidelines on the Use of Adjuvant Pembrolizumab for Renal Cell Carcinoma. Bedke J, Albiges L, Capitanio U, Giles RH, Hora M, Lam TB, Ljungberg B, Marconi L, Klatte T, Volpe A, Abu-Ghanem Y, Dabestani S, Fernández-Pello S, Hofmann F, Kuusk T, Tahbaz R, Powles T, Bex A. Eur Urol. 2022 Feb;81(2):134-137.
17. Patient-centered care can be improved by joint meetings between cancer patient group leaders and health care providers. Herrera-Caceres JO, Ajaj R, Leão R, Barello S, Rodriguez-Covarrubias F, Zequi SC, Maskens D, Giles RH, Lavallée LT, Jewett MAS. Patient Educ Couns. 2022 Mar;105(3):786-787.
18. Evolving Role of Adjuvant Systemic Therapy for Kidney and Urothelial Cancers. Apolo AB, Msaouel P, Niglio S, Simon N, Chandran E, Maskens D, Perez G, Ballman KV, Weinstock C. Am Soc Clin Oncol Educ Book. 2022 Apr;42:1-16.
19. Management of Metastatic Clear Cell Renal Cell Carcinoma: ASCO Guideline. Rathmell WK, et al. J Clin Oncol. 2022 Sep 1;40(25):2957-2995.
20. Kidney Cancer, Version 3.2022, NCCN Clinical Practice Guidelines in Oncology. Motzer RJ, et al. J Natl Compr Canc Netw. 2022 Jan;20(1):71-90.
21. From Basic Science to Clinical Translation in Kidney Cancer: A Report from the Second Kidney Cancer Research Summit. Choueiri TK, et al. Clin Cancer Res. 2022 Mar 1;28(5):831-839.
2021 IKCC Publications
1. Giles RH, Maskens D, Martinez R, Kastrati K, Casto C, Mauro JCJ, Bick R, Packer M, Heng DYC, Larkin J, Bex A, Jonasch, MacIennan SJ, Jewett MAS. Patient-Reported Experience of Diagnosis, Management, and Burden of Renal Cell Carcinomas: Results from a Global Patient Survey in 43 countries. Accepted Dec 2021, European Urology Open Science (in press)
2. Bedke J, Albiges L, Capitanio U, Giles RH, Hora M, Lam TB, Ljungberg B, Marconi L, Klatte T, Volpe A, Abu-Ghanem Y, Dabestani S, Fernández-Pello S, Hofmann F, Kuusk T, Tahbaz R, Powles T, Bex A. 2021 Updated European Association of Urology Guidelines on the Use of Adjuvant Pembrolizumab for Renal Cell Carcinoma. Eur Urol. 2021 Dec 14:S0302-2838(21)02198-9.
3. Choueiri TK, Albiges L, Atkins MB, Bakouny Z, Bratslavsky G, Braun DA, Haas NB, Haanen JBAG, Hakimi AA, Jewett MAS, Jonasch E, Kaelin WG, Kapur P, Labaki C, Lewis B, McDermott DF, Pal SK, Pels K, Poteat S, Powles T, Rathmell WK, Rini BI, Signoretti S, Tannir NM, Uzzo RG, Hammers HJ. From Basic Science to Clinical Translation in Kidney Cancer: A Report from the Second Kidney Cancer Research Summit. Clin Cancer Res. 2021 Dec 29:clincanres.3238.2021.
4. Motzer RJ, Jonasch E, Agarwal N, Alva A, Baine M, Beckermann K, Carlo MI, Choueiri TK, Costello BA, Derweesh IH, Desai A, Ged Y, George S, Gore JL, Haas N, Hancock SL, Kapur P, Kyriakopoulos C, Lam ET, Lara PN, Lau C, Lewis B, Madoff DC, Manley B, Michaelson MD, Mortazavi A, Nandagopal L, Plimack ER, Ponsky L, Ramalingam S, Shuch B, Smith ZL, Sosman J, Dwyer MA, Gurski LA, Motter A. Kidney Cancer, Version 3.2022, NCCN Clinical Practice Guidelines in Oncology. J Natl Compr Canc Netw. 2022 Jan;20(1):71-90.
5. Bedke J, Albiges L, Capitanio U, Giles RH, Hora M, Lam TB, Ljungberg B, Marconi L, Klatte T, Volpe A, Abu-Ghanem Y, Dabestani S, Pello SF, Hofmann F, Kuusk T, Tahbaz R, Powles T, Bex A. The 2021 Updated European Association of Urology Guidelines on Renal Cell Carcinoma: Immune Checkpoint Inhibitor-based Combination Therapies for Treatment-naive Metastatic Clear-cell Renal Cell Carcinoma Are Standard of Care. Eur Urol. 2021 Oct;80(4):393-397
6. Björkqvist J, Giles RH, Cornford P, Makaroff LE, Van Hemelrijck M, Darraugh J, Cowl J, MacLennan S, MacLennan SJ. Providing a Framework for Meaningful Patient Involvement in Clinical Practice Guideline Development and Implementation. Eur Urol Focus. 2021 Sep 28:S2405-4569(21)00264-9.
7. Herrera-Caceres JO, Ajaj R, Leão R, Barello S, Rodriguez-Covarrubias F, Zequi SC, Maskens D, Giles RH, Lavallée LT, Jewett MAS. Patient-centered care can be improved by joint meetings between cancer patient group leaders and health care providers. Patient Educ Couns. 2021 Jul 16:S0738-3991(21)00482-1.
8. Vat LE, Finlay T, Robinson P, Barbareschi G, Boudes M, Diaz Ponce AM, Dinboeck M, Eichmann L, Ferrer E, Fruytier SE, Giles RH, Hey C, Broerse JEW, Schuitmaker-Warnaar TJ. Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics. Health Expect. 2021 Apr;24(2):491-506.
9. Bedke J, Albiges L, Capitanio U, Giles RH, Hora M, Lam TB, Ljungberg B, Marconi L, Klatte T, Volpe A, Abu-Ghanem Y, Dabestani S, Fernández-Pello S, Hofmann F, Kuusk T, Tahbaz R, Powles T, Bex A. Updated European Association of Urology Guidelines on Renal Cell Carcinoma: Nivolumab plus Cabozantinib Joins Immune Checkpoint Inhibition Combination Therapies for Treatment-naïve Metastatic Clear-Cell Renal Cell Carcinoma. Eur Urol. 2021 Mar;79(3):339-3
For publications prior to 2021 please click here