NATIONAL PROSPECTIVE COHORT ON SARCOMAS/GIST/DESMOID AND CONNECTIVE TISSUE TUMOURS FRESH-PEF8158-en Isabelle RAY-COQUARD NATIONAL PROSPECTIVE COHORT ON SARCOMAS/GIST/DESMOID AND CONNECTIVE TISSUE TUMOURS NETSARC FRESH-PEF8158-en 8158 FRESH-PEF8158 Jean-Yves BLAY Isabelle RAY-COQUARD CENTRE LEON BERARD Epidemiology France Portal (PEF) INFO SARCOMES null Jean-Yves;BLAY Isabelle;RAY-COQUARD Sarcoma rare cancers network clinical biological samples ISKS project genetic treatment Oncology Biological determinants: Genetic predisposition Environmental determinants: Other Healthcare system determinants: Use of care Biological determinants Environmental determinants Healthcare system determinants The objectives of this cohort are: real-time integration of patients into a database- to generate real-time national and regional descriptive data for all patients with sarcoma - to provide national indicators of patient care and equal access to care and innovative treatments - to improve knowledge of rare tumours - to investigate the link between sarcomas and genetics. null France Individuals Patients population Male Female Infant, Newborn (birth to 28 days) Infant (28 days to 2 years) Child, Preschool (2 to 5 years) Child (6 to 12 years) Young Adult (19 to 24 years) Adult (25 to 44 years) Middle Aged (45 to 64 years) Aged (65 to 79 years) Aged, 80 and over (80 years and more) patients with sarcoma or connective tissue tumours (all ages and histologies) discussed in multidisciplinary meetings (RCP) in regional centres of expertise specialising in the treatment of sarcomas Clinical data Participant-reported health data Biological data Socio-demographic data Paraclinical data (non-biological) : Imaging Paraclinical data (non-biological) : Other Health event/morbidity Health event/mortality Health care consumption and services Quality of life/health perception Other Through organizations (health services or institutions schools businesses etc.) [10000-20000[ individuals Converting or copying information into a structured record Observational Study Observational Study 17 346:- 11 646 sarcomes/GIST/desmoide.- 5 700 tumeurs conjonctives à malignité intermédiaire ou bénigne. Unknown Restricted access Users can connect with a unique password. Different rights are allocated per profile (clinician, clinical research associate, quality manager, administrator ...). Website terms of use must be previously signed. Non-identifiable patient data (HASH system is being put in place). A scientific committee consisting of representatives clinicians and pathologists centres to large volume of patients in the network is responsible for controlling, analysing and authorising requests for studies from the shared data base. Shared database is accessible online and developed by two network I.T. professionals. Data is hosted by a professional hosting provider. Access on specific project only