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