ITMO Santé Publique
ITMO Santé Publique
Date de modification : 23/10/2017 | Version : 1 | ID : 73354
| Général | |
| Identification | |
| Nom détaillé | Clinical biological database of the Sarcoma network |
| Sigle ou acronyme | BCB sarcomes |
| Numéro d'enregistrement (ID-RCB ou EUDRACT, CNIL, CPP, etc.) | RRePS/Netsarc favourable opinion in September 2010 and authorisation of the CNIL under number 910390 in September 2010 |
| Thématiques générales | |
| Domaine médical |
Cancer research |
| Pathologie, précisions | GIST sarcoma and desmoid tumours |
| Déterminants de santé |
Healthcare system and access to health care services Others (specify) |
| Autres, précisions | Evaluation of the treatment, prognostic factors |
| Mots-clés | sarcomas, networks, expertise, epidemiological and clinical research |
| Responsable(s) scientifique(s) | |
| Nom du responsable | Coindre |
| Prénom | Jean Michel |
| Adresse |
Institut Bergonié 229, cours de l'Argonne 33076 Bordeaux Cedex |
| Téléphone | 05 56 33 33 29 |
| J.Coindre@bordeaux.unicancer.fr | |
| Laboratoire | Department of Pathology |
| Organisme | Institut Bergonié |
| Nom du responsable | Mathoulin-Pelissier |
| Prénom | Simone |
| Adresse |
Institut Bergonié 229, cours de l'Argonne 33076 Bordeaux Cedex |
| Téléphone | 05 56 33 33 98 |
| S.Mathoulin@bordeaux.unicancer | |
| Laboratoire | Clinical Research and Epidemiology Unit and CIC1401 |
| Organisme | Institut Bergonié |
| Collaborations | |
| Participation à des projets, des réseaux, des consortiums |
Yes |
| Financements | |
| Financements |
Public |
| Précisions | INCa |
| Gouvernance de la base de données | |
| Organisation(s) responsable(s) ou promoteur | Institut Bergonié pour le groupe français des sarcomes et tumeurs osseuses (GSF-GETO) |
| Statut de l’organisation |
Secteur Privé |
| Existence de comités scientifique ou de pilotage |
Yes |
| Labellisations et évaluations de la base de données | INCa label |
| Contact(s) supplémentaire(s) | |
| Caractéristiques | |
| Type de base de données | |
| Type de base de données |
Morbidity registers |
| Informations complémentaires concernant la constitution de l'échantillon |
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. |
| Objectif de la base de données | |
| Objectif principal |
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. |
| Critères d'inclusion | Patients with soft tissue and visceral sarcomas included in one of the existing databases: RRePS/NetSarc, Conticabase and ConticaGist |
| Type de population | |
| 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 concernée |
Sick population |
| Pathologie | C00-C75 - Malignant neoplasms, stated or presumed to be primary, of specified sites, except of lymphoid, haematopoietic and related tissue |
| Sexe |
Male Woman |
| Champ géographique |
National |
| Détail du champ géographique | 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. |
| Collecte | |
| Dates | |
| Année du premier recueil | 2010 |
| Année du dernier recueil | Collection in progress |
| Taille de la base de données | |
| Taille de la base de données (en nombre d'individus) |
Greater than 20 000 individuals |
| Détail du nombre d'individus | Conticabase and conticaGist contain data from approximately 13,000 patients and the RRePS database contains data from approximately 8,500 patients |
| Données | |
| Activité de la base |
Current data collection |
| Type de données recueillies |
Clinical data Biological data Administrative data |
| Données cliniques, précisions |
Direct physical measures Medical registration |
| Détail des données cliniques recueillies | 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) |
| Données biologiques, précisions | data on the characteristics of the tumour |
| Données administratives, précisions | patient identity (initials), date of birth and sex, geographical location, agreement or not of the patient to use his/her tumour material for research |
| Existence d’une biothèque |
Yes |
| Contenu de la biothèque |
Tissues |
| Paramètres de santé étudiés |
Health event/morbidity Health event/mortality Others |
| Modalités | |
| Mode de recueil des données | The data is collected by clinical researchers with dedicated time and via consultation meetings |
| Procédures qualité utilisées | 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 |
| Suivi des participants |
Yes |
| Modalités de suivi des participants |
Monitoring by contact with the referring doctor |
| Détail du suivi | occasional follow-up by specific scientific project |
| Appariement avec des sources administratives |
No |
| Valorisation et accès | |
| Valorisation et accès | |
| Accès | |
| Existence d’un document qui répertorie les variables et les modalités de codage |
Yes |
| Charte d'accès aux données (convention de mise à disposition, format de données et délais de mise à disposition) |
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' |
| Accès aux données agrégées |
Access on specific project only |
| Accès aux données individuelles |
Access on specific project only |
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