UroCCR Database: French Research Network for Kidney Cancer -UroCCR (UroCCR)

UroCCR Database: French Research Network for Kidney Cancer (National Multidisciplinary Clinical and Biological Database on Kidney Cancer)

Kidney cancer management has become increasingly complex with the diversification of treatment options and the integration of multidisciplinary care. To meet these challenges, the UroCCR network was established in France as a national registry and research platform dedicated to renal cancer. Funded by the French National Cancer Institute (INCa), UroCCR prospectively collects comprehensive real-world data on patient care and disease evolution, while systematically linking these records with annotated biological samples (plasma, urine, and both healthy and tumour tissues). For each case, more than one thousand variables may be recorded, covering clinical, imaging, and patient-reported information.

More than a registry, UroCCR is a collaborative network of clinical and research professionals using a shared, evolving tool that supports rapid implementation of studies and fosters active knowledge generation. Unlike retrospective registries or sample-centred biobanks, UroCCR offers prospective, patient-focused inclusion and a wide scope of investigation-from translational and technological research to clinical evaluation and social sciences. It also supports multiple ancillary studies, including retrospective analyses and prospective clinical or observational trials, and operates under a structured governance system with recognised national and international labels.

By combining a rigorously structured, multicentre dataset with linkage to the French national health data system (SNDS), the platform uniquely unites detailed clinical annotation with population-wide coverage, creating a high-value environment for advancing kidney cancer research and care.

Study Overview

• Status: Recruiting
• Conditions: Kidney Cancer
• Intervention / Treatment: Procedure: Radical nephrectomy versus partial nephrectomy (according surgeon judgement)

Detailed Description

The UroCCR project is a national kidney cancer registry and research network designed to address the specific challenges of renal cell carcinoma (RCC) management. While general cancer registries such as FRANCIM provide valuable surveillance data, most large-scale registries lack the depth of clinical, biological, and longitudinal follow-up information necessary to advance research and enable comprehensive analyses of kidney cancer outcomes. UroCCR was created in 2011 to meet this need.

With over 21,000 cases collected from 58 centres across France, UroCCR is now one of the largest national databases dedicated to kidney cancer worldwide. The registry captures detailed clinical parameters, treatments and outcomes, complemented by patient-reported measures and socioeconomic data. Because management practices within UroCCR follow the recommendations of the French Association of Urology (AFU), the dataset closely reflects real-world practice and provides a reliable basis for comparison with national and European guidelines. Moreover, patient data can be reused across numerous studies, allowing researchers to explore multiple scientific questions without requiring new enrolments for each project.

A distinctive strength of UroCCR is its integration of multiple research dimensions. Beyond clinical outcomes, it evaluates quality of life and the social and economic impact of kidney cancer. The registry is linked to annotated biobanking and national medico-administrative datasets, enabling translational studies and health services research. Additionally, UroCCR supports multiple ancillary studies, both retrospective analyses based on real-world data and prospective studies including randomised clinical trials or observational cohorts.

The project benefits from robust governance structures, ensuring standardised procedures, data quality, and ethical oversight. It has also received various national and international labels, recognising its methodological rigour and excellence in research infrastructure.

Digital innovations developed within the network, such as UroConnect® for perioperative monitoring and UroPredict machine learning models for recurrence and survival prediction, highlight its commitment to advancing care through new technologies.

At the national level, projects such as CARARE are developing personalised treatment strategies, including a molecular tumour board for non-clear cell RCC. Internationally, UroCCR is strengthening collaboration through partnerships with the European Association of Urology and the European Robotic Urology Section, contributing to harmonised data collection and large-scale multicentre research.

Ultimately, UroCCR functions as a dynamic research platform that unites clinicians, researchers, and patients around a shared infrastructure. By combining detailed clinical data with translational research, digital health tools, structured governance, recognised labels, and international partnerships, it aims to generate increasingly precise insights into RCC and to support the development of more effective, personalised treatment strategies in France and worldwide.

Objectives

• Promote research initiatives on this pathology by structuring national resources and skills,
• Create a multi-centre annotated collection of biological samples,
• Generate prospective research projects of all types and across various thematic fields,

• Allow any data controller who meets the necessary requirements to reuse the data contained therein for the purposes of research, evaluation or the advancement of knowledge in the following subject areas:

  1-Descriptive epidemiology of kidney cancer; 2-Pharmaco-epidemiology and treatment monitoring: safety, efficacy, real-world treatment indications, costs; 3 -Quality of life and other 'patient-reported outcomes' and/or 'patient-reported experiences' (which may be collected automatically via digital methods using UroConnect), personal, family, professional and social consequences of kidney cancer; 4-Research into diagnostic, prognostic and predictive biomarkers; 5-Research into markers predictive of disease progression; 6-Evaluation of clinical practices and treatment techniques (surgical, interventional and drug-based) ; 7-Research related to the National Health Data System.

• Study Type: Observational
• Enrollment (Estimated): 30000

Contacts and Locations

• Study Contact: Name: Jean-Christophe BERNHARD, PHU; Phone Number: +33 (0)5 57 82 03 50; Email: jean-christophe.bernhard@chu-bordeaux.fr
• Study Contact Backup: Name: Pierre BIGOT; Phone Number: +33 (0)2 41 35 64 94; Email: PiBigot@chu-angers.fr

Study Locations

• Belgium
  • Brussels, Belgium
    • Not yet recruiting
    • Hopital Universitaire de Bruxelles
    • Contact: Thierry ROUMEGUERE, Pr
• France
  • Angers, France, 49100
    • Recruiting
    • CHU Angers
    • Contact: Pierre BIGOT, Pr
  • Bordeaux, France, 33076
    • Recruiting
    • CHU Bordeaux
    • Contact: Jean-Christophe BERNHARD, Pr
  • Bordeaux, France
    • Recruiting
    • Clinique Tivoli-Ducos
    • Contact: Clément MICHIELS, Dr
  • Cabestany, France
    • Recruiting
    • Polyclinique Médipôle Saint-Roch_Cabestany
    • Contact: Pierre GIMEL, Dr
  • Caen, France
    • Recruiting
    • CHU CAEN
    • Contact: Xavier TILLOU, Pr
  • Chalon-sur-Saône, France
    • Not yet recruiting
    • Centre hospitalier Chalon sur Saône
    • Contact: Nicolas KOUTLIDIS, Dr
  • Clermont-Ferrand, France
    • Recruiting
    • CHU de Clermont-Ferrand
    • Contact: Laurent GUY, Pr
  • Colmar, France
    • Not yet recruiting
    • Hôpitaux Civils de Colmar
    • Contact: Jonathan THOUVENIN, Dr
  • Corbeil-Essonnes, France
    • Recruiting
    • Ch Sud Francilien
    • Contact: Pietro GRANDE, Dr
  • Creil, France
    • Not yet recruiting
    • Groupe Hospitalier Public du Sud de l'Oise
    • Contact: Fares KOSSEIFI, Dr
  • Créteil, France, 94010
    • Recruiting
    • CHU Henri Mondor - APHP
    • Contact: Alexandre INGELS, Pr
  • Dijon, France
    • Recruiting
    • CHU de Dijon et CLCC Dijon
    • Contact: Benjamin DELATTRE, Dr
  • Fontainebleau, France
    • Recruiting
    • CH du Sud Seine et Marne
    • Contact: Karim BEN OTHMAN, Dr
  • Hénin-Beaumont, France
    • Not yet recruiting
    • Polyclinique d'Henin Beaumont
    • Contact: Martin LORETTE, Dr
  • La Roche-sur-Yon, France
    • Not yet recruiting
    • Centre Hospitalier Departemental de Vendee
    • Contact: Constance DEBOUDT-MACE, Dr
  • La Tronche, France, 38700
    • Recruiting
    • CHU Grenoble
    • Contact: Jean-Luc DESCOTES, Pr
  • Le Mans, France
    • Recruiting
    • Pôle Santé Sud
    • Contact: Olivier BELAS, Dr
  • Le Puy-en-Velay, France, 43000
    • Not yet recruiting
    • Clinique Bon Secours-ELSAN
    • Contact: Marlène GUANDALINO, Dr
  • Levallois-Perret, France
    • Not yet recruiting
    • Hôpital Franco-Britannique,
    • Contact: Caroline PETTENATI, Dr
  • Libourne, France
    • Recruiting
    • CH Libourne
    • Contact: Benjamin ROUGET, Dr
  • Lille, France
    • Recruiting
    • Hôpital privé La Louvière
    • Contact: Charles BALLEREAU, Dr
  • Lille, France, 59037
    • Recruiting
    • CHRU Lille - Centre Oscar Lambret
    • Contact: Jonathan OLIVIER, Pr
  • Limoges, France, 87042
    • Recruiting
    • CHU Limoges
    • Contact: Aurélien DESCAZEAUD
  • Longjumeau, France
    • Not yet recruiting
    • Clinique de l'Yvette
    • Contact: Benjamin GABAY, Dr
  • Lyon, France, 69002
    • Recruiting
    • HCL LYON
    • Contact: Philippe PAPAREL, Pr
  • Marseille, France
    • Recruiting
    • APH Marseille
    • Contact: Eric LECHEVALLIER, Pr
  • Marseille, France
    • Recruiting
    • Institut Paoli-Calmette
    • Contact: Nicolas BRANGER, Dr
  • Meaux, France
    • Not yet recruiting
    • Grand Hôpital de l'Est Francilien
    • Contact: Julien SARKIS, Dr
  • Metz, France
    • Not yet recruiting
    • Centre Hospitalier d' Annecy Genevois
    • Contact: Arnoux VALENTIN, Dr
  • Mont-de-Marsan, France
    • Recruiting
    • CH Mont de Marsan
    • Contact: Jean-Jacques PATARD, Pr
  • Montauban, France
    • Recruiting
    • Clinique du Pont de Chaume
    • Contact: Jérôme GAS, Dr
  • Montpellier, France
    • Not yet recruiting
    • CHU de Montpellier
    • Contact: Rodolphe THURET, Dr
  • Nancy, France
    • Recruiting
    • CHRU de Nancy
    • Contact: Pascal ESCHWEGE, Pr
  • Nantes, France
    • Recruiting
    • CHU de Nantes
    • Contact: Stéphane DE VERGIE, Dr
  • Nice, France
    • Recruiting
    • CHU de Nice
    • Contact: Matthieu DURAND, Pr
  • Nice, France
    • Recruiting
    • Clinique Saint George
    • Contact: Alexandre MARSAUD, Dr
  • Nîmes, France
    • Recruiting
    • CHU de Nîmes
    • Contact: Alexis FONTENIL, Dr
  • Orléans, France
    • Recruiting
    • CHU d'Orléans
    • Contact: Nicolas BRICHART, DR
  • Paris, France
    • Not yet recruiting
    • Hopital Saint Louis
    • Contact: Sonia BEBANE, Dr
  • Paris, France
    • Not yet recruiting
    • Institut Mutualiste Montsouris
    • Contact: Mostefa BENNAMOUN, Dr
  • Paris, France, 75013
    • Recruiting
    • CHU Kremlin Bicêtre - APHP
    • Contact: Sébastien PARIER, Dr
  • Paris, France, 75014
    • Recruiting
    • CH St Joseph
    • Contact: Xavier DURAND, Pr
  • Paris, France, 75015
    • Recruiting
    • Hôpital Européen Georges Pompidou - APHP
    • Contact: François AUDENET, Dr
  • Paris, France
    • Recruiting
    • Hôpital Bichat -APHP
    • Contact: Evangelos Xylinas, Dr
  • Paris, France
    • Recruiting
    • Hôpital Pitié Salpétrière - APHP
    • Contact: Morgan ROUPRET, Pr
  • Paris, France
    • Recruiting
    • Hôpital Cochin Port-Royal - APHP
    • Contact: Julien ANRACT, Dr
  • Paris, France
    • Recruiting
    • CHU Tenon - APHP
    • Contact: Olivier TRAXER, Pr
  • Plérin, France
    • Recruiting
    • Hôpital Privé Des Côtes d'Armor
    • Contact: Fabien BOULIERE, Dr
  • Poitiers, France
    • Recruiting
    • CHU Poitiers
    • Contact: Maxime VALLEE, Dr
  • Périgueux, France
    • Recruiting
    • Polyclinique Francheville
    • Contact: Richard MALLET, Dr
  • Quincy-sous-Sénart, France
    • Recruiting
    • Hôpital privé Claude Galien
    • Contact: Julien DEFONTAINES, Dr
  • Quint-Fonsegrives, France
    • Recruiting
    • Clinique La Croix Du Sud
    • Contact: Jean-Baptiste BEAUVAL, Dr
  • Reims, France
    • Recruiting
    • CHU Reims
    • Contact: Charlotte JONCOUR, Dr
  • Rennes, France, 35000
    • Recruiting
    • CHU Rennes - Centre Eugène Marquis
    • Contact: Karim BENSALAH, Pr
  • Rouen, France, 76031
    • Recruiting
    • CHU Rouen
    • Contact: Christian PFISTER, Pr
  • Saint-Etienne, France
    • Recruiting
    • CHU St-Etienne
    • Contact: Lionel BADET, Pr
  • Saint-Herblain, France
    • Recruiting
    • Clinique Santé Atlantique de Nantes
    • Contact: Quentin-Come LE CLERC, Dr
  • Saint-Herblain, France
    • Recruiting
    • Clinique Urologique Nantes Atlantis
    • Contact: Lionel HOQUETIS, Dr
  • Saint-Martin-d'Hères, France
    • Recruiting
    • Clinique Belledonne
    • Contact: Jean-Alexandre LONG, Pr
  • Strasbourg, France, 67000
    • Recruiting
    • CHU Strasbourg
    • Contact: Hervé LANG, Pr
  • Strasbourg, France
    • Recruiting
    • ICANS
    • Contact: Gabriel MALOUF, Pr
  • Toulouse, France
    • Recruiting
    • Clinique Pasteur
    • Contact: Julien GUILLOTREAU, Dr
  • Toulouse, France, 31059
    • Recruiting
    • CHU Toulouse - Centre Claudius Régaud
    • Contact: Nicolas DOUMERC, Dr
  • Tours, France
    • Recruiting
    • CHRU Tours
    • Contact: Franck BRUYERE, Pr
  • Vandœuvre-lès-Nancy, France
    • Not yet recruiting
    • Institut de Cancérologie lorraine
    • Contact: Sophie MARTIN, Dr
• French Guiana
  • Kourou, French Guiana
    • Recruiting
    • Centre Hospitalier de Kourou
    • Contact: Vincent RAVERY, Pr
• Reunion
  • Saint-Denis, Reunion
    • Not yet recruiting
    • CHU Bellepierre
    • Contact: Davidson SYPRE, Dr

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

Patients with Kidney cancer

Description

Inclusion Criteria:

• Adult patient with kidney cancer
• Patient with no opposition to collection of its data for the study

Exclusion Criteria: none

Study Plan

How is the study designed?

Design Details

• Observational Models: Cohort
• Time Perspectives: Prospective

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Patients; Adult patients with kidney cancer	Procedure: Radical nephrectomy versus partial nephrectomy (according surgeon judgement)

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Promotion of Prospective Research Projects	Development and conduct of prospective research projects across a broad range of thematic fields related to kidney cancer .	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Establishment of a Multicentre Annotated Biological Sample Collection	Annotation of biological samples collection and associated clinical data to support translational and clinical research in kidney cancer.	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).
Advancement of Knowledge in Kidney Cancer Descriptive Epidemiology	Characterization of the incidence, prevalence, distribution, and trends of kidney cancer within the population	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).
Advancement of Knowledge in Pharmacoepidemiology and Treatment Monitoring in Kidney Cancer	Evaluatation of treatment safety, efficacy, real-world indications, utilization patterns, and associated healthcare costs	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).
Advancement of Knowledge in Quality of Life and Patient-Reported Outcomes in Kidney Cancer	Assessment of quality of life, patient-reported outcomes (PROs), and patient-reported experiences (PREs), including the personal, familial, professional, and social impact of kidney cancer. Data may be collected through digital tools such as UroConnect	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).
Diagnostic, Prognostic, and Predictive Biomarker Research	Identification and validation of biomarkers for diagnosis, prognosis, and prediction of treatment response in kidney cancer	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).
Evaluation of Clinical Practices and Treatment Strategies	Assessment of surgical, interventional, and pharmacological treatment approaches to improve clinical practice and patient outcomes.	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).
Research Using National Health Data System Data	Conduct of studies using data from the National Health Data System to support epidemiological, clinical, and health services research	From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).

Collaborators and Investigators

• Sponsor: University Hospital, Bordeaux
• Investigators: Principal Investigator: Jean-Christophe BERNHARD, PHU, University Hospital, Bordeaux

Publications and helpful links

General Publications

• Brehier G, Bouvier A, Besnier L, Willoteaux S, Nedelcu C, Culty T, Aube C, Bigot P. Renal function after partial nephrectomy following intra-arterial embolization of renal tumors. Sci Rep. 2020 Dec 7;10(1):21352. doi: 10.1038/s41598-020-78461-5.
• Binzaqr S, Kryza D, Giraudet AL, Bernhard JC, Gross-Goupil M, Yacoub M, Margue G, Hindie E, Morgat C. Prostate-specific membrane antigen (PSMA) expression in primary and metastatic renal cell cancer (UroCCR-65 study). EJNMMI Res. 2025 Apr 9;15(1):38. doi: 10.1186/s13550-025-01232-8.
• Ingels A, Bensalah K, Beauval JB, Paparel P, Roupret M, Lang H, Nouhaud FX, Henon F, Bruyere F, Audenet F, Lebacle C, Baumert H, Long JA, Tambwe R, Charles T, Xylinas E, Waeckel T, Michiels C, Asselineau J, Benard A, Margue G, Boissier R, Bigot P, Bernhard JC; Comite Cancer de l'Association Francaise d'Urologie (CCAFU). Comparison of open and robotic-assisted partial nephrectomy approaches using multicentric data (UroCCR-47 study). Sci Rep. 2022 Nov 8;12(1):18981. doi: 10.1038/s41598-022-22912-8.
• Morrone A, Bentellis I, Bernhard JC, Bensalah K, Champy C, Bruyere F, Doumerc N, Olivier J, Audenet F, Parier B, Brenier M, Long JA, Nouhaud FX, Branger N, Lang H, Charles T, Xylinas E, Waeckel T, Gomez F, Boissier R, Rouget B, Shaikh A, Chevallier D, Ambrosetti D, Durand M. Positive surgical margin's impact on short-term oncological prognosis after robot-assisted partial nephrectomy (MARGINS study: UroCCR no 96). Sci Rep. 2022 Oct 31;12(1):18342. doi: 10.1038/s41598-022-23146-4.

Helpful Links

• Program I.Care Bordeaux
• UroPredict Algorithm
• UroCCR website

Study record dates

Study Major Dates

• Study Start: December 1, 2011
• Primary Completion (Estimated): December 1, 2040
• Study Completion (Estimated): December 1, 2040

Study Registration Dates

• First Submitted: July 12, 2016
• First Submitted That Met QC Criteria: September 20, 2017
• First Posted (Actual): September 26, 2017

Study Record Updates

• Last Update Posted (Actual): June 25, 2026
• Last Update Submitted That Met QC Criteria: June 22, 2026
• Last Verified: September 1, 2025

More Information

Terms related to this study

• Keywords: Kidney cancer; Medical treatment; Surgical approaches; Multicentric and multidisciplinary network
• Additional Relevant MeSH Terms: Urogenital Diseases; Urogenital Neoplasms; Neoplasms by Site; Neoplasms; Male Urogenital Diseases; Kidney Diseases; Urologic Diseases; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Urologic Neoplasms; Kidney Neoplasms
• Other Study ID Numbers: CHUBX 2011/38

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO