{"doc_desc":{"title":"French National Registry of Childhood Solid Tumors (certified registry)","idno":"FRESH-PEF64-en","producers":[{"name":"Brigitte LACOUR","affiliation":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF64-en","IDno":{"metadata_no":[{"agency":"PEF","code":"64"},{"agency":"FReSH","code":"FRESH-PEF64"}]},"title":"French National Registry of Childhood Solid Tumors (certified registry)","alternate_title":"RNTSE"},"study_authorization":{"agency":[]},"authoring_entity":[{"name":"Brigitte;LACOUR","firstname":"Brigitte","lastname":"LACOUR","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/016ncsr12","role":"organisation id"},{"title":"SIREN","uri":"200042166","role":"organisation id"}],"email":"brigitte.lacour@univ-lorraine.fr","affiliationName":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","PILabo":"CHRU NANCY \/ Registre National des Tumeurs Solides de l'Enfant","isContact":true}],"oth_id":[{"name":"","type":""},{"name":"","type":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"UNIVERSITE PARIS CITE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/05f82e368","role":"sponsor id"},{"title":"SIREN","uri":"130025737","role":"sponsor id"}],"role":"sponsor"},{"name":"INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02vjkv261","role":"sponsor id"},{"title":"SIREN","uri":"180036048","role":"sponsor id"}],"role":"sponsor"},{"name":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/016ncsr12","role":"sponsor id"},{"title":"SIREN","uri":"200042166","role":"sponsor id"}],"role":"sponsor"},{"name":"ASSOCIATION POUR LA RECHERCHE EPIDEMIOLOGIQUE DANS LES CANCERS DE L'ENFANT ET DE L'ADOLESCENT (ARECEA)","extlink":[{"title":"SIREN","uri":"392242822","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"INSTITUT NATIONAL DU CANCER (INCA)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/03m8vkq32"},{"title":"SIREN","uri":"187512777"}]},{"name":"SANTE PUBLIQUE FRANCE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00dfw9p58"},{"title":"SIREN","uri":"130022338"}]}]},"distribution_statement":{"contact":[{"name":"Brigitte;LACOUR","lastname":"LACOUR","firstname":"Brigitte","type":"contact","email":"brigitte.lacour@univ-lorraine.fr","affiliationName":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/016ncsr12","role":"organisation id","title":"ROR"},{"uri":"200042166","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"childadolescent"}],"topics":[{"topic":"Oncology","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/5784b7f1-c7ce-49d9-9f38-aebcda0ff41d"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D008495"}]},{"topic":"Paediatrics","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/bf8aaaac-ddee-41cd-bb8a-c5a63de3fcbd"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D010372"}]},{"topic":"Neoplasms","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1630407678","title":"CIM-11"}]},{"topic":"Environmental determinants: Other","vocab":"health determinant"},{"topic":"Environmental determinants","vocab":"health determinant"}],"purpose":"Objectives in terms of public health (surveillance, evaluation): 1) Produce national reference rates on the incidence of solid tumors in children and on their histological distribution and monitor the geographical and temporal variations of this. 2) Provide the survival rates for the various cancers in the general population, all treatments taken as a whole and monitor the geographical and temporal variations in this. 3) Describe the care sectors followed by children, from the first symptoms to the treatment, and the methods for care as well as its determinants. Collaborate with clinicians of the French Society for the fight against Cancers in Childhood and Adolescent Cancers (SFCE) on the setting up of long-term follow-up of cohorts of children with cancer. Objectives in terms of research: Conduct and associate ecological studies and case\/control studies concerning the risks of cancer associated with environmental exposure, population movements, the way of life and early conditions of exposure to common infections, genetic factors interacting or not interacting with the environmental factors (the etiologic research work is particularly developed by UMRS-1018 Team 6 of Inserm).","abstract":"","coll_dates":[{"start":"2000-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"","analysis_unit":"Individuals","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"value\": \"Male\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008297\"\n            }\n        },\n        {\n            \"value\": \"Female\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D005260\"\n            }\n        }\n    ],\n    \"level_age_clusion_I\": [\n        {\n            \"value\": \"Infant, Newborn (birth to 28 days)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007231\"\n            }\n        },\n        {\n            \"value\": \"Infant (28 days to 2 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007223\"\n            }\n        },\n        {\n            \"value\": \"Child, Preschool (2 to 5 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002675\"\n            }\n        },\n        {\n            \"value\": \"Child (6 to 12 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients population\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"The following are included: All solid tumors in children defined in the International Classification of Childhood Cancers  (ICCC) and belonging to the diagnostic groups III to XII, as well as the \\\"\\\"borderline\\\"\\\" tumors and certain benign tumors. Appearing starting on January 1, 2000 in a child under the age of 15 years on the date of the first sure diagnostic, and for whom the usual domicile is located in metropolitan France. Starting on January 1, 2011, extension of the recording up to the age of 18 years for all the cases domiciled in metropolitan France and in an Overseas D\u00e9partement (Guadeloupe, French Guiana, Martinique, Reunion)\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Other']","quality_statement":{"standards":[{"name":"['ICD-O 3 and grouped according to ICCC']","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Health event\/morbidity\r\nHealth event\/mortality\r\nHealth care consumption and services"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Other\"}']","sample_frame":{"frame_unit":{"unit_type":""}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Converting or copying information into a structured record\"}"],"research_instrument":"Access on specific project only","sources":[],"target_sample_size":">= 20000 individuals","response_rate":"2003: 1045 cases 2004: 1031 cases 2005: 1012 cases2006: 1025 cases"},"method_notes":"Observational Study","study_class":"Unknown","notes":[{"subject":"research type","values":["Observational Study"]},{"subject":"observational study method","values":["Morbidity registry"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"","status":"{\"value\":\"Restricted access\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"","conf_dec":[{"txt":""}],"spec_perm":[{"txt":"","required":""}],"contact":[{"name":""}],"deposit_req":"","cit_req":""},"notes":""}},"additional":{"IsImport":true,"versionLang":"en","originLang":"en","autoTranslation":false,"status":"imported","creationDate":"14-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"04-10-2017","isContributorPI":false,"contributorName":"Brigitte LACOUR","contributorAffiliation":"CENTRE HOSPITALIER REGIONAL ET UNIVERSITAIRE DE NANCY","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[]},"relatedDocument":[{"type":"","title":"Site du Registre national des tumeurs solides de l'enfant et du Registre national des h\u00e9mopathies malignes de l'enfant","link":"http:\/\/rnce.inserm.fr"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)"],"otherFundingAgentType":["",""]},"sponsor":{"sponsorType":["Public (France)","Public (France)","Public (France)","Private non-profit"],"otherSponsorType":["","","",""]},"governance":{"committee":false},"collaborations":{"networkConsortium":""},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":true,"followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"Active collection in the hospital departments by survey takers","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"Metropolitan France (+ DOM since 01\/01\/2011)"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","isDataInBiobank":false,"biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":true,"fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}