BCB sarcomes - Clinical biological database of the Sarcoma network

Head :
Coindre Jean Michel, Department of Pathology
Mathoulin-Pelissier Simone, Clinical Research and Epidemiology Unit and CIC1401

Last update : 10/23/2017 | Version : 1 | ID : 73354

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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 Clinical biological database of the Sarcoma network
Sign or acronym BCB sarcomes
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation RRePS/Netsarc favourable opinion in September 2010 and authorisation of the CNIL under number 910390 in September 2010
General Aspects
Medical area Cancer research
Pathology (details) GIST sarcoma and desmoid tumours
Health determinants Healthcare system and access to health care services
Others (specify)
Others (details) Evaluation of the treatment, prognostic factors
Keywords sarcomas, networks, expertise, epidemiological and clinical research
Scientific investigator(s) (Contact)
Name of the director Coindre
Surname Jean Michel
Address Institut Bergonié
229, cours de l'Argonne
33076 Bordeaux Cedex
Phone 05 56 33 33 29
Email J.Coindre@bordeaux.unicancer.fr
Unit Department of Pathology
Organization Institut Bergonié
Name of the director Mathoulin-Pelissier
Surname Simone
Address Institut Bergonié
229, cours de l'Argonne
33076 Bordeaux Cedex
Phone 05 56 33 33 98
Email S.Mathoulin@bordeaux.unicancer
Unit Clinical Research and Epidemiology Unit and CIC1401
Organization Institut Bergonié
Collaborations
Participation in projects, networks and consortia Yes
Funding
Funding status Public
Details INCa
Governance of the database
Sponsor(s) or organisation(s) responsible Institut Bergonié pour le groupe français des sarcomes et tumeurs osseuses (GSF-GETO)
Organisation status Private
Presence of scientific or steering committees Yes
Labelling and database evaluation INCa label
Additional contact
Main features
Type of database
Type of database Morbidity registers
Additional information regarding sample selection. The current project is based on existing databases:
1. Conticabase and conticaGist: databases used for research (retrospective clinical research and biological research) and which serve as virtual tumour banks. The tumours (frozen tissue and tumours included in paraffin) are stored in the participating centres.
2. RRePS/NetSarc: networks of rare tumours and database that record potential cases treated in France since 01/01/2000, describing the medical practices for the clinical management of patients with sarcoma, GIST or desmoid tumours as well as the anatomopathological interpretation.
Database objective
Main objective The objective of the programme is to improve quality in the collection of samples and data, the design of new modules and tools, and improve interoperability to improve epidemiological, clinical, fundamental and translational research and medical practices in these pathologies.
Three areas of work have been defined:
- WP1: data collection and data management
- WP2: development of the clinico-biological sarcoma database
- WP3: communication.
Inclusion criteria Patients with soft tissue and visceral sarcomas included in one of the existing databases: RRePS/NetSarc, Conticabase and ConticaGist
Population type
Age Newborns (birth to 28 days)
Infant (28 days to 2 years)
Early childhood (2 to 5 years)
Childhood (6 to 13 years)
Adolescence (13 to 18 years)
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
Pathology C00-C75 - Malignant neoplasms, stated or presumed to be primary, of specified sites, except of lymphoid, haematopoietic and related tissue
Gender Male
Woman
Geography area National
Detail of the geography area The RRePS and NetSarc networks are each coordinated by three sites: Bergonié Cancer Institute in Bordeaux, the Centre Léon Bérard in Lyon and Institut Gustave Roussy in Villejuif and work in conjunction with regional expert centres throughout the country.
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2010
Date of last collection (YYYY or MM/YYYY) Collection in progress
Size of the database
Size of the database (number of individuals) Greater than 20 000 individuals
Details of the number of individuals Conticabase and conticaGist contain data from approximately 13,000 patients and the RRePS database contains data from approximately 8,500 patients
Data
Database activity Current data collection
Type of data collected Clinical data
Biological data
Administrative data
Clinical data (detail) Direct physical measures
Medical registration
Details of collected clinical data Medical history, location and depth of the tumour, Data contained in the Multidisciplinary Consultation Meeting or in the patient's medical record: type of tumour, diagnosis and date, metastasis, imaging before surgery, initial biopsy, grade, date and establishment of surgery, quality of exeresis, local/metastatic recurrence, date of latest news, vital status, patient participation in a clinical trial, data on the sample (sampling date, reception, diagnosis, techniques used and stored material)
Biological data (detail) data on the characteristics of the tumour
Administrative data (detail) patient identity (initials), date of birth and sex, geographical location, agreement or not of the patient to use his/her tumour material for research
Presence of a biobank Yes
Contents of biobank Tissues
Health parameters studied Health event/morbidity
Health event/mortality
Others
Procedures
Data collection method The data is collected by clinical researchers with dedicated time and via consultation meetings
Quality procedure(s) used Database training for the different users. There is a quality procedure guide (control of duplicates, cases to be deleted, missing data, cases to be reviewed in third reading, consistency control between variables). External audits of the centres are carried out for the quality of the data
Participant monitoring Yes
Monitoring procedures Monitoring by contact with the referring doctor
Details on monitoring of participants occasional follow-up by specific scientific project
Links to administrative sources No
Promotion and access
Promotion
Access
Presence of document that lists variables and coding procedures Yes
Terms of data access (charter for data provision, format of data, availability delay) There are:
1/ A charter for the use of the websites and the shared database of the sarcoma RRePS and NetSarc reference networks
2/ A charter for conticanet: 'Definition of rules for access and use of data and materiel among CTCN partners'
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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