UroCCR Database: French Research Network for Kidney Cancer -UroCCR

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.

• Establishment of a Multicentre Annotated Biological Sample Collection [Time frame: 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 [Time frame: 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 [Time frame: 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 [Time frame: From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).]
• Diagnostic, Prognostic, and Predictive Biomarker Research [Time frame: From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).]
• Evaluation of Clinical Practices and Treatment Strategies [Time frame: From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).]
• Research Using National Health Data System Data [Time frame: From patient enrollment (Day 0) until the end of follow-up (death or withdrawal from the study).]