The UroCCR Network

The French National Research Network on Kidney Cancer—UroCCR—is a multidisciplinary medico-scientific network focused on therapeutic management and applied research in the field of kidney cancer.

It includes 60 centres across France and abroad, involving university hospitals, regional hospitals, private clinics, and cancer research centres.

The UroCCR Network, coordinated by Bordeaux University Hospital Centre, manages two distinct health data warehouses:

UroCCR: This database has been labeled by the French National Cancer Institute as a national clinico-biological database in oncology since 2013 (authorisation CNIL No. DT-2024-207),

UroCCR-Chain: Developed in partnership with Clinityx, which enables the linking of data from the health data warehouse to the French National Health Data System (SNDS). It also facilitates the development of projects related to the medical and economic evaluation of health trajectories.

These data warehouses contain information on more than 21,000 patients, representing over 10 million real-world data records (demographic and clinical data, data associated with biological samples, PREMs and PROMs, experimental results).

Key milestones of the UroCCR database

2006
UroCCR foundation

2011
INCa-certified clinic-biological database

2013
UroCCR national deployment

2016
INCa-dgos ambu-rein – designation
for ambulatory kidney surgery

2017
Rein-3d-print

2019
Uroconnect
co-developement

2021
National research
networks + carare

2022
Award-winning
project – DiPRU (BPI)

2022
Award-winning
project – Uropredict

2022
SNDS linkage with UroCCR-chain

2023
French National
Authority for
health certification

2024
ANR ”Clinical
Investigation Network”-certified

2025
Inclusion in the
health data hub catalogue

2025
IBISA-certified

Data

11,818,284
data

7,72
studies on
average / patient

17,923
patients included in
at least 1 study

30,53
months of
average follow-up

Core Functioning

Governance

In order to achieve the objectives of the UroCCR project, governance is based on consultation and medico-scientific consensus. UroCCR is composed of five committees, represented below.

The Steering Committee is composed as follows:

Coordinator,
Assistant Coordinator,
Manager’s Representative,
UroCCR Project Manager,
I.CaRe Bordeaux Programme Manager,
Representative of the Subcontractor(s)
Scientific representatives: one from each specialty (Urology, Oncology, Radiology, Anatomic Pathology, Biological Resource Centre)

Representative, one for each centre,
Invited members:
- Representative of the Oncology Committee of the French Association of Urology (CCAFU) or, by delegation, the
  representative of the CCAFU’s “Rein” sub-committee,
- Representative of the Kidney Cancer Research Association (ARTuR),
- Representative of the CARARE Network;
- Representative of the FRANCIM Network.

It is composed as it follows:

President of the Scientific and Ethics Committee,
Coordinator,
Assistant Coordinator,
Representative of the Methodological Support Unit for Clinical Research (USMR) of the Coordinating Centre,
Scientific representatives: one from each specialty (Urology, Oncology, Radiology, Anatomic Pathology, Biological Resource Centre),
Representative of the ARTuR association,
Medical ethicist,

Invited members:
- Representative of the Oncology Committee of the French Association of Urology (CCAFU) or, by delegation, the
  representative of the CCAFU’s “Rein” sub-committee,
- Representatives of the Urogenital tumours study group (GETUG),
- Representative of the French genitourinary imaging society (SIGU),
- Representative of the French Club of Urological Pathology (UROPATH),
- Representative of the CARARE Network.

The Operating Committee is composed as follows:

Coordinator,
Assistant Coordinator,
UroCCR Project Manager,

I.CaRe Bordeaux Programme Manager,
UroCCR Clinical Research Associates,
Manager’s Representative.

The Industrial Committee is composed as follows:

Coordinator,
Assistant Coordinator,
UroCCR Project Manager,
I.CaRe Bordeaux Programme Manager,

Representative of the Technical Innovation Committee,
Representative, one for each industrial partner that has signed an agreement with the UroCCR Network.

The Technical Innovation Committee is composed as it follows:

Coordinator,
Assistant Coordinator,
UroCCR Project Manager,
President of the Scientific and Ethics Committee,

Representatives of the UroCCR Centres,
Representative of the Robotic Training Center Bordeaux,
Representatives of UroCCR Network Partners involved in research valorisation activities.

Retrospective projects on the UroCCR network follow a structured process to ensure data quality and regulatory compliance:

Project’s submission

The project leader downloads and completes the project form available on the network’s website.
The form, detailing the objectives, target populations and planned analyses, is sent to the UroCCR team for review. A meeting may be organised to define or clarify certain points.

Scientific and ethical evaluation

The UroCCR team analyses the scientific relevance of the project and verifies its compliance with regulatory and ethical requirements.
The scientific committee may be called upon to validate the feasibility and value of the project.

Definition of data and participating centres

Once the project has been approved, the necessary data is identified.
Participating centres are contacted to confirm their involvement and specify the terms and conditions for accessing the data.

Data extraction

Only data necessary for the project is extracted from the UroCCR health data warehouse in order to apply the principle of data minimisation.

Analysis and research results

The analyses specified in the protocol are carried out by the project leader.
The results are shared with the project leader at the contributing centres during the annual scientific days and in accordance with the terms set out in the partnership charter or collaboration agreement (depending on the project).

Publication and valorisation

The results may be published or presented at congresses, in accordance with co-authorship and confidentiality rules.
The UroCCR team ensures that the contributions of each centre are recognised and valued.