Publications

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.

IKCC Publications 2025

Manuscripts

Bedke J, Ghanem YA, Albiges L, Bonn S, Campi R, Capitanio U, Dabestani S, Hora M, Klatte T, Kuusk T, Lund L, Marconi L, Palumbo C, Pignot G, Powles T, Tran M, Volpe A, Bex A. Updated European Association of Urology Guidelines on the Use of Adjuvant Immune Checkpoint Inhibitors and Subsequent Therapy for Renal Cell Carcinoma. Eur Urol. 2025 Apr;87(4):491-496. doi: 10.1016/j.eururo.2025.01.014. Epub 2025 Feb 3. PMID: 39904712.

Berg SA, La Rosa S, Zhang T, Pierorazio PM, Albiges L, Beckermann KE, Campbell MT, Carlo MI, Coleman K, George DJ, Geynisman DM, Johnson R, Jonasch E, Maranchie JK, McGregor BA, Shapiro DD, Singer EA, Shuch BM, Stadler WM, Tannir NM, Zakharia Y, Vaishampayan UN, Thall PF, Msaouel P.(Epub 2024). Impact of postprogression therapies on overall survival: Recommendations from the 2023 kidney cancer association think tank meeting. Urol Oncol. 2025 Mar;43(3):135-146. doi: 10.1016/j.urolonc.2024.10.022. Epub 2024 Nov 5. PMID: 39500687.

Beyer K, Venderbos LDF, Roobol MJ, Giles RH, Verhagen P, Barod R, Wintner LM, Jewett MAS, Van Hemelrijck M, Kinsella N. Navigating choices: understanding the decision-making journey of patients with localised kidney cancer. BJU Int. 2025 Jun;135(6):953-959. doi: 10.1111/bju.16635. Epub 2025 Jan 8. PMID: 39778039; PMCID: PMC12053016.

Bex A, Ghanem YA, Albiges L, Bonn S, Campi R, Capitanio U, Dabestani S, Hora M, Klatte T, Kuusk T, Lund L, Marconi L, Palumbo C, Pignot G, Powles T, Schouten N, Tran M, Volpe A, Bedke J. European Association of Urology Guidelines on Renal Cell Carcinoma: The 2025 Update. Eur Urol. 2025 Mar 10:S0302-2838(25)00139-3. doi:  10.1016/j.eururo.2025.02.020. Epub ahead of print. PMID: 40118739.

Bex A, Jewett M, Lewis B, Abel EJ, Albiges L, Berg SA, Bratslavsky G, Braun D, Brugarolas J, Choueiri TK, Finelli A, George D, Haas NB, Hakimi AA, Hammers H, Hirsch M, Jonasch E, Kapur P, Linehan WM, Master V, McGregor B, McKay RR, Mehra R, Pal S, Poteat S, Powles TB, Rossi SH, Shapiro DD, Signoretti S, Singer EA, Stravin C, Tannir N, Vaishampayan U, Xu W, Stewart GD. A Call for a Neoadjuvant Kidney Cancer Consortium: Lessons Learned from Other Cancer Types. Eur Urol. 2025 Apr;87(4):385-389. doi: 10.1016/j.eururo.2025.01.007. Epub 2025 Jan 23. PMID: 39855942.

Cella D, Derosa M, Floden L, Giles RH, Lothgren M, Ogareva A, Powles T, Purnajo I, Choueiri TK, Bergerot C, Motzer RJ, Bedke J. Health-related quality-of-life profile and clinical outcomes in first-line advanced renal cell carcinoma: a modeling analysis based on the CheckMate 9ER study. ESMO Open. 2025 Jun;10(6):105115. doi: 10.1016/j.esmoop.2025.105115. Epub 2025 May 23. PMID: 40412006; PMCID: PMC12152543.

Degenhardt J, Tolkach Y, Amin MB, Mosiello G, Baydar DE, Gall EC, DiCola J, Elhag D, Frezza C, Halbritter J, Guillermo IB, Jewett MAS, Lattouf JB, Lovitt G, Lundgren PO, Maher ER, Mulders P, Shuch B, Hartmann A, Müller RU; HLRCC Alliance in collaboration with the ERA Working Group “Genes&Kidney”, the European Reference Networks ERKNet, eUROGEN and GENTURIS, the Uropathology Working Group of the European Society of Pathology and the IKCC. The impact of the new WHO Classification of renal cell carcinoma on the diagnosis of hereditary leiomyomatosis and renal cell carcinoma. Nephrol Dial Transplant. 2025 Feb 20:gfaf032. doi: 10.1093/ndt/gfaf032. Epub ahead of print. PMID: 39979023.

van Leeuwaarde RS, Ahmad S, van Nesselrooij B, Zandee W, Giles RH. Von Hippel-Lindau Syndrome. 2000 May 17 [updated 2025 May 1]. In: Adam MP, Bick S, Mirzaa GM, Pagon RA, Wallace SE, Amemiya A, editors. GeneReviews^® [Internet]. Seattle (WA): University of Washington, Seattle; 1993–2026. PMID: 20301636.

Marandino L, Campi R, Amparore D, Tippu Z, Albiges L, Capitanio U, Giles RH, Gillessen S, Kutikov A, Larkin J, Motzer RJ, Pierorazio PM, Powles T, Roupret M, Stewart GD, Turajlic S, Bex A. Neoadjuvant and Adjuvant Immune-based Approach for Renal Cell Carcinoma: Pros, Cons, and Future Directions. Eur Urol Oncol. 2025 Apr;8(2):494-509. doi: 10.1016/j.euo.2024.09.002. Epub 2024 Sep 25. PMID: 39327187.

Pecoraro A, Costagli S, Marandino L, Varma R, Albersen M, Capitanio U, Jewett M, Kutikov A, MacLennan S, Stewart GD, Zondervan P, Masieri L, Minervini A, Serni S, Bex A, Campi R. Quality Indicators for Renal Cancer Care: A Systematic Review. Eur Urol Oncol. 2025 Oct;8(5):1416-1427. doi: 10.1016/j.euo.2025.05.012. Epub 2025 Jun 6. PMID: 40483206.

Rossi SH, Choueiri TK, Jewett M, Jones JO, Laird A, Lewis B, Tippu Z, Van Der Mijn JCK, Bex A, Stewart GD; International Neoadjuvant Kidney Cancer Consortium (INKCC) members. What is required to deliver practice-changing neoadjuvant trials in kidney cancer? An International Neoadjuvant Kidney Cancer Consortium Delphi study. Ann Oncol. 2025 Oct;36(10):1231-1234. doi: 10.1016/j.annonc.2025.05.540. Epub 2025 Jun 4. PMID: 40480551.

IKCC Abstracts

EAU – 25 – Poster
Empowering Choices: Insights from Healthcare Professionals on Shared Decision-Making in Kidney Cancer
Authors: Katharina Beyer, Lionne Venderbos, Monique Roobol, Olivier Exertier, Deborah Maskens, Michael Jewett 

AUA25 – Poster
Beyer, Katharina & Venderbos, Lionne & Roobol, Monique & Maskens, Deborah & Jewett, Michael. (2025). Empowering Choices: Insights From Healthcare Professionals On Shared Decision-Making In Kidney Cancer. Journal Of Urology. 213.

EMUC 25 – Poster
Mapping patient experiences: addressing gaps in care for people living with localised renal cell carcinoma
Authors: Deborah Maskens¹, Denis Brézillon², Pascale Cavillon³, Christine Collins⁴, Sharon Deveson Kell⁵, Andrew Greaves⁶, Viktor Grünwald⁷, Daniel YC Heng⁸, Juan Carlos Julián Mauro⁹, Karin Kastrati¹⁰, James Larkin¹¹, Alessia Ogareva³, Malcolm Packer⁶, Giuseppe Procopio¹², Claudia Ungarelli¹, Michael Jewett¹

EMUC 25 – Poster
Shared Decision Making in Urology: Consensus and challenges identified by the joint patient advocates, nurses, and urologists from the EAU patient office.
Authors: MacLennan S., van Balken M., van Poppel H., Karavitakis M., Tiller C., van Poelgeest-Pomfret M.L., Briers E., Meijlink J., Filicevas A., Ungarelli C., Comes R., Cardone A., Liatsikos, E.,
Caldwell J., Greene R., Daly J., deSantis A., Yared W., Rogers E.

KCRS 2025
Patient Perceptions of Biomarker Testing in Kidney Cancer (KC) from the International Kidney Cancer Coalition (IKCC) Global Patient Survey (GPS)
Eric Jonasch¹ , Michael Jewett^2,, Laurence Albiges³, Stênio de Cássio Zequi⁴, Axel Bex⁵, Margaret Hickey⁶, Christine Collins⁷, Karin Kastrati⁸, Jyoti Patil Shah⁹, & Deborah Maskens⁶
Citation: Jonasch E, Jewett M, Albiges L, Zequi SDC, Bex A, Hickey M, Collins C, Kastrati K, Shah JP, Maskens D. 66: Patient perceptions of biomarker testing in kidney cancer (KC) from the KInternational kidney Cancer Coalition (IKCC) global patient survey (GPS). Oncologist. 2025 Oct 9;30(Suppl 2):oyaf276.067. doi: 10.1093/oncolo/oyaf276.067. PMCID: PMC12509848.

ESMO 2025 – Poster
Unmet Needs & Disparities in Kidney Cancer (KC): International Kidney Cancer Coalition (IKCC) Global Patient Survey (GPS)
Authors: Eric Jonasch^1,, Michael Jewett^2,, Axel Bex³, Stênio de Cássio Zequi⁴, Shannon Boldon⁵, Christine Collins⁶, Saeed Dabestani⁷, Selcuk Erdem⁸, Margaret Hickey⁹, Karin Kastrati¹⁰, Jyoti Patil Shah¹¹, Roman Sosnowski¹², Yüksel Ürün¹³, & Deborah Maskens⁹

JADPROLive – Poster
Patient and Caregiver Perspectives on Shared Decision Making in Kidney Cancer from the International Kidney Cancer Coalition Global Patient Survey
Authors: Margaret Hickey¹, Eric Jonasch², Michael Jewett³, Christine Collins⁴, Karin Kastrati⁵, Robin Martinez⁶, Jyoti Patil Shah⁷, Deborah Maskens¹, Stênio de Cássio Zequi⁸

IKCS NA – Poster
Knowledge Gaps and Shared Decision Making (SDM) Disparities in Kidney Cancer (KC) Across North America (NA): Results from the International Kidney Cancer Coalition (IKCC) Global Patient Survey (GPS)
Authors: Eric Jonasch¹, Deborah Maskens², Stênio de Cássio Zequi³, Christine Collins⁴, Omar de Jesus⁵, Margaret Hickey², Robin Martinez⁶ & Michael Jewett⁷

ESMO Asia – Mini Oral presentation with expert discussant
Knowledge Gaps and Shared Decision Making (SDM) Disparities in Kidney Cancer (KC) Across Asia: Results from the International Kidney Cancer Coalition (IKCC) Global Patient Survey
Authors: Muralitharan Munisamy¹, Eric Jonasch^2,, Michael Jewett³,Deborah Maskens⁴, Selcuk Erdem⁵, Olivier Exertier⁴, Margaret Hickey⁴, Jinyung Paik⁶, Inkeon Park⁷, Jyoti Patil Shah⁸, Dr. Yoshi Tomita⁹, Yüksel Ürün¹⁰, Anne Wilson⁴  &  Stênio de Cássio Zequi¹¹

For publications prior to 2025 please click here