UroCCR - National Multicentre, Multidisciplinary, Clinical-Biological Database for Kidney Cancer

Head :
Bernhard Jean-Christophe, Service de chirurgie urologique et transplantation - CHU Bordeaux

Last update : 08/05/2015 | Version : 2 | ID : 8176

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name National Multicentre, Multidisciplinary, Clinical-Biological Database for Kidney Cancer
Sign or acronym UroCCR
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL: DR-2013-206
General Aspects
Medical area Biology
Cancer research
Radiology and medical imaging
Urology, andrology and nephrology
Health determinants Genetic
Medicine
Keywords kidney cancer, clinical-biological database, medical and scientific network, medical oncology, ablation treatment, anatomical pathology, oncogenetics, therapeutic treatment, surgery
Scientific investigator(s) (Contact)
Name of the director Bernhard
Surname Jean-Christophe
Address Place Amélie Rabat Léon 33076 Bordeaux Cedex
Phone +33 (0)5 57 82 03 70
Email jean-christophe.bernhard@chu-bordeaux.fr
Unit Service de chirurgie urologique et transplantation - CHU Bordeaux
Organization CHU de
Collaborations
Participation in projects, networks and consortia Yes
Details Prospective ancillary projects: - Robotic Partial Nephrectomy national study (RoPaN) - Cancer and tArgeted theRapy: survey of Long term Adverse events (CARLA Rein) Partnerships and scientific support: - French Urology Association (AFU) - Urogenital Tumours Study Group (GETUG) - Urogenital Imaging Society (SIGU) - French Urological Pathology Club - French Cancer Registry Network (FRANCIM) - Kidney Tumour Research Association (ARTuR) - University of Bordeaux - Cancéropôle Grand Sud-Ouest
Funding
Funding status Mixed
Details INCa Pharmaceutical industry
Governance of the database
Sponsor(s) or organisation(s) responsible CHU Bordeaux
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Longitudinal study (except cohorts)
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Patients enrolled prospectively and/or retrospectively will be notified by their physician of their selection for inclusion in the UroCCR database with signed consent and opportunity to object.
Database objective
Main objective The main objective is to rely on a common multidisciplinary and unifying tool (UroCCR Database), to develop a national network of medical and scientific activity focused on therapeutic treatment and applied research for kidney cancer.

The complementarity of skills and culture of a strong translational connection, collaboration with cancer registries and the creation of a collection of multicentre, annotated biological samples allow ancillary research projects to be carried out as part of the UroCCR network, aimed at economic and lead time efficiency.
Inclusion criteria - Adult patient with kidney cancer
- Patient not objecting to the collection of data for the study
Population type
Age Adulthood (19 to 24 years)
Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Elderly (65 to 79 years)
Great age (80 years and more)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area CHU de Bordeaux, Kremlin Bicêtre Hospital, Institut Gustave Roussy, CHU Angers/Centre Paul Papin, CHU Grenoble, CHU Strasbourg, CHU Lyon, CHU Henri Mondor, CHU Toulouse/Claudius Regaud Institute, Saint Joseph Hospital, Georges Pompidou European Hospital, CHU Rouen
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2007
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 1424 patients (19/06/2014)
Data
Database activity Current data collection
Type of data collected Clinical data
Paraclinical data
Biological data
Administrative data
Clinical data (detail) Direct physical measures
Medical registration
Details of collected clinical data Concerns all kidney cancer diagnostic and therapeutic fields (open and mini-invasive surgery, interventional radiology, procedures associated with treating metastases, targeted therapies).
Paraclinical data (detail) Anatomic pathology , radiology, oncogenetics, standard biology.
Biological data (detail) Virtual collection of biological samples: Abnormal tissue, healthy tissue, urine, plasma and serum.
Administrative data (detail) Demographic characteristics of cancer patients
Presence of a biobank Yes
Contents of biobank Serum
Plasma
Fluids (saliva, urine, amniotic fluid, …)
Tissues
Details of biobank content Abnormal (primary tumour and metastasis) tissue/cryopreserved healthy tissue, Abnormal (primary tumour and metastasis) tissue/healthy tissue in paraffin, plasma, serum, urine.
Health parameters studied Health event/morbidity
Health event/mortality
Health care consumption and services
Care consumption (detail) Hospitalization
Medical/paramedical consultation
Medicines consumption
Procedures
Data collection method Data collection is through a relational database with secure online access that includes all variables regarding demographics, surgery, anatomic pathology, radiology, ablative treatment, oncogenetics and medical oncology (including INCa repository database).
Participant monitoring Yes
Details on monitoring of participants Monitored in accordance with current clinical recommendations.
Links to administrative sources No
Promotion and access
Promotion
Link to the document bibliographie relative bdd uroccr.pdf
Link to the document bibliographie relative aux projets ayant beneficie de lapport scientifique du reseau uroccr.pdf
Link to the document http://tinyurl.com/Hal-UROCCR
Description List of publications in HAL
Link to the document http://tinyurl.com/Pubmed-UROCCR
Description List of publications in Pubmed
Access
Terms of data access (charter for data provision, format of data, availability delay) The confidentiality of data collected for UroCCR base is assured by:
- Approval of the entire study by the Advisory Committee on Research Information Processing in the Health Field and the National Commission for Data Protection and Liberties (CNIL).
- Professional confidentiality to which all members of UroCCR are subjected to (signing a confidentiality agreement), as well as the participating centres (signing a partnership charter on confidentiality regulations).
- Strictly anonymous analysis of collected data.

The database is:
- Anonymous to ensure data confidentiality
- Secured by an encrypted connection (https) and an individual user account (username and password), ensuring data protection for each centre.

Third party teams may access data following validation of the project submitted to the Scientific Committee.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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