{"doc_desc":{"title":"Registre des H\u00e9mopathies Malignes de C\u00f4te d\u2019Or (registre qualifi\u00e9)","idno":"FRESH-PEF218-fr","producers":[{"name":"Marc MAYNADIE","affiliation":"UNIVERSITE BOURGOGNE EUROPE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF218-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"218"},{"agency":"FReSH","code":"FRESH-PEF218"}]},"title":"Registre des H\u00e9mopathies Malignes de C\u00f4te d\u2019Or (registre qualifi\u00e9)","alternate_title":"RHEMCO"},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Marc;MAYNADIE","PILabo":"Universit\u00e9 de Bourgogne Franche-Comt\u00e9 \/ INSERM UMR 1231","affiliationName":"UNIVERSITE BOURGOGNE EUROPE","extlink":[{"title":"","uri":"","role":"pi id"},{"title":"IdRef","uri":"055743811","role":"pi id"},{"title":"SIREN","uri":"938230612","role":"organisation id"},{"title":"RNSR","uri":"200716508T","role":"labo id"}],"email":"marc.maynadie@chu-dijon.fr","isContact":"Oui"}],"oth_id":[{"name":"R\u00e9seau FRANCIM, r\u00e9seau REPIH, Eurocare, Rarecare, Concord, Interlymph","type":"collaboration"}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"CENTRE HOSPITALIER UNIVERSITAIRE DE DIJON","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/0377z4z10","role":"sponsor id"},{"title":"SIREN","uri":"262100076","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":"Marc;MAYNADIE","email":"marc.maynadie@chu-dijon.fr","type":"contact","affiliationName":"UNIVERSITE BOURGOGNE EUROPE","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/00g700j37","role":"organisation id","title":"ROR"},{"uri":"938230612","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[],"topics":[{"topic":"Oncologie","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":"H\u00e9matologie","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/9239f328-78c9-40a5-a0b9-8e66fd9b6245"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D006402"}]},{"topic":"D\u00e9terminants biologiques : Pr\u00e9dispositions g\u00e9n\u00e9tiques","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux : Autres","vocab":"health determinant"},{"topic":"D\u00e9terminants li\u00e9s au syst\u00e8me de sant\u00e9 : Consommation des soins","vocab":"health determinant"},{"topic":"D\u00e9terminants comportementaux","vocab":"health determinant"},{"topic":"Syst\u00e8mes de soins et acc\u00e8s aux soins","vocab":"health determinant"},{"topic":"D\u00e9terminants biologiques","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux","vocab":"health determinant"},{"topic":"D\u00e9terminants li\u00e9s au syst\u00e8me de sant\u00e9","vocab":"health determinant"}],"purpose":"- Objectifs du registre en termes de sant\u00e9 publique (surveillance, \u00e9valuation): 1) le recensement de tous les cas d\u2019h\u00e9mopathies malignes survenant dans une population bien d\u00e9finie afin de fournir aux autorit\u00e9s sanitaires et sociales des donn\u00e9es pr\u00e9cises relatives \u00e0 l\u2019incidence, la r\u00e9partition par sexe, par tranche d\u2019\u00e2ge, par zone g\u00e9ographique et par cat\u00e9gorie socio\u2010professionnelle de ces affections; 2) l\u2019enregistrement de donn\u00e9es relatives \u00e0 ces cas permettant d\u2019\u00e9valuer diff\u00e9rentes caract\u00e9ristiques comme le stade de diagnostic, les \u00e9l\u00e9ments du diagnostic et du bilan d\u2019extension, la prise en charge th\u00e9rapeutique et la survie ; 3) un r\u00f4le d\u2019alerte des pouvoirs publics dans l\u2019\u00e9volution rapide de l\u2019incidence de certaines pathologies et dans l\u2019identification de l\u2019origine de cette \u00e9volution ; 4) un r\u00f4le dans l\u2019am\u00e9lioration de la qualit\u00e9 des donn\u00e9es relatives aux h\u00e9mopathies malignes dans les registres g\u00e9n\u00e9raux de cancer. - Objectifs du registre en termes de recherche; 1) en \u00e9pid\u00e9miologie \u00e9tiologique avec la mise en \u00e9vidence des facteurs de risque environnementaux, personnels et familiaux des h\u00e9mopathies malignes; 2) en \u00e9pid\u00e9miologie mol\u00e9culaire avec le d\u00e9veloppement des \u00e9tudes \u00e0 l\u2019\u00e9chelle g\u00e9nique ou \u00e9pig\u00e9n\u00e9tique, 3) en \u00e9pid\u00e9miologie pharmacologique avec l\u2019\u00e9volution des th\u00e9rapeutiques, leur mise en place, l\u2019acc\u00e8s aux nouvelles th\u00e9rapeutiques et leur effet \u00e0 l\u2019\u00e9chelle populationnelle sur la survie des patients, la qualit\u00e9 de cette survie et les cons\u00e9quences \u00e0 distance de leur utilisation; 4) la mise en place de collection de tissu tumoral","abstract":"","coll_dates":[{"start":"1980-01-01","end":"2014-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Bourgogne Franche-Comt\u00e9']","analysis_unit":"Individus","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"value\": \"Masculin\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008297\"\n            }\n        },\n        {\n            \"value\": \"F\u00e9minin\",\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\": \"Nouveau-n\u00e9 (naissance \u00e0 28j)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007231\"\n            }\n        },\n        {\n            \"value\": \"Nourrisson (28j \u00e0 2 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D007223\"\n            }\n        },\n        {\n            \"value\": \"Petite enfance (2 \u00e0 5 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002675\"\n            }\n        },\n        {\n            \"value\": \"Enfance (6 \u00e0 12 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        },\n        {\n            \"value\": \"Adolescence (13 \u00e0 18 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000293\"\n            }\n        },\n        {\n            \"value\": \"Adulte (19 \u00e0 24 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D055815\"\n            }\n        },\n        {\n            \"value\": \"Adulte (25 \u00e0 44 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000328\"\n            }\n        },\n        {\n            \"value\": \"Adulte (45 \u00e0 64 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008875\"\n            }\n        },\n        {\n            \"value\": \"Personne \u00e2g\u00e9e (65 \u00e0 79 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000368\"\n            }\n        },\n        {\n            \"value\": \"Grand \u00e2ge (80 ans et plus)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D000369\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Les cas enregistr\u00e9s sont les prolif\u00e9rations malignes d\u00e9velopp\u00e9es \u00e0 partir des types cellulaires constituant le tissu h\u00e9matopoi\u00e9tique diagnostiqu\u00e9es, chez les sujets habitant dans le d\u00e9partement de la C\u00f4te d\u2019Or depuis plus de 6 mois\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es paracliniques','Donn\u00e9es biologiques','Donn\u00e9es socio-d\u00e9mographiques']","quality_statement":{"standards":[{"name":"['ICD-O-3']","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Ev\u00e9nements de sant\u00e9\/morbidit\u00e9\r\nEv\u00e9nements de sant\u00e9\/mortalit\u00e9\r\nConsommation de soins\/services de sant\u00e9\r\nQualit\u00e9 de vie\/sant\u00e9 per\u00e7ue"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Autre\"}']","sample_frame":{"frame_unit":{"unit_type":""}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Autre\"}"],"research_instrument":"Acc\u00e8s restreint sur projet sp\u00e9cifique","sources":[{"sourceCitation":{"titlStmt":{"titl":""},"holdings":"","notes":{"subject":"source purpose","value":""}},"srcOrig":["Base m\u00e9dico-administrative"]}],"target_sample_size":"[1000-10000[ individus","response_rate":"1980-2014: 8836"},"method_notes":"Etude observationnelle","study_class":"Inconnu","notes":[{"subject":"research type","values":["Etude observationnelle"]},{"subject":"observational study method","values":["Registre de morbidit\u00e9"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"","status":"{\"value\":\"Acc\u00e8s r\u00e9serv\u00e9\",\"extLink\":[{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"}]}"},"dataset_use":{"restrictions":"","conditions":"Pour ce qui concerne l\u2019acc\u00e8s aux donn\u00e9es du registre, le chercheur int\u00e9ress\u00e9 peut contacter le responsable scientifique qui \u00e9valuera sa 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