{"doc_desc":{"title":"Registre Dijonnais des Accidents Vasculaires C\u00e9r\u00e9braux (registre qualifi\u00e9)","idno":"FRESH-PEF54-fr","producers":[{"name":"Yannick BEJOT","affiliation":"UNIVERSITE BOURGOGNE EUROPE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF54-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"54"},{"agency":"FReSH","code":"FRESH-PEF54"}]},"title":"Registre Dijonnais des Accidents Vasculaires C\u00e9r\u00e9braux (registre qualifi\u00e9)","alternate_title":""},"study_authorization":{"agency":[{"name":"CNIL"},{"name":"CESREES"}]},"authoring_entity":[{"type":"investigator","name":"Yannick;BEJOT","PILabo":"Registre Dijonnais des AVC, EA7460 (PEC2), UFR Sciences Sant\u00e9 Dijon, Universit\u00e9 de Bourgogne, UBFC, Service de Neurologie, CHU Dijon Bourgogne","affiliationName":"UNIVERSITE BOURGOGNE EUROPE","extlink":[{"title":"ORCID","uri":"0000-0001-7848-7072","role":"pi id"},{"title":"IdRef","uri":"13283491X","role":"pi 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(INSERM)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02vjkv261"},{"title":"SIREN","uri":"180036048"}]},{"name":"SANTE PUBLIQUE FRANCE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00dfw9p58"},{"title":"SIREN","uri":"130022338"}]},{"name":"UNIVERSITE BOURGOGNE EUROPE","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00g700j37"},{"title":"SIREN","uri":"938230612"}]}]},"distribution_statement":{"contact":[{"name":"Yannick;BEJOT","email":"yannick.bejot@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":[{"keyword":"infarctus c\u00e9r\u00e9bral"},{"keyword":"h\u00e9morragie c\u00e9r\u00e9bral"},{"keyword":"accident isch\u00e9mique transitoire"},{"keyword":"accident vasculaire c\u00e9r\u00e9bral (AVC)"}],"topics":[{"topic":"Neurologie","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/c4793dfe-e80e-49dd-9fcc-a1a742de1b25"},{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/00a5c4f4-b7ee-41a4-bcdf-3a02e6be1660"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D009462"}]},{"topic":"H\u00e9morragie sousarachno\u00efdienne non pr\u00e9cis\u00e9e comme \u00e9tant d'origine an\u00e9vrismale ou non an\u00e9vrismale","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/133091217","title":"CIM-11"}]},{"topic":"H\u00e9morragie intrac\u00e9r\u00e9brale","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/873092535","title":"CIM-11"}]},{"topic":"H\u00e9morragie intracr\u00e2nienne","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1990827977","title":"CIM-11"}]},{"topic":"Infarctus c\u00e9r\u00e9bral d\u00fb \u00e0 une occlusion d'une petite art\u00e8re c\u00e9r\u00e9brale","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1595033000","title":"CIM-11"}]},{"topic":"Accident vasculaire c\u00e9r\u00e9bral, non pr\u00e9cis\u00e9 comme \u00e9tant h\u00e9morragique ou isch\u00e9mique","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1442995018","title":"CIM-11"}]},{"topic":"Accident isch\u00e9mique transitoire","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/826335789","title":"CIM-11"}]},{"topic":"D\u00e9terminants environnementaux : Climat","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux : Autres","vocab":"health determinant"},{"topic":"D\u00e9terminants comportementaux","vocab":"health determinant"},{"topic":"D\u00e9terminants environnementaux","vocab":"health determinant"},{"topic":"D\u00e9terminants li\u00e9s au syst\u00e8me de sant\u00e9 : Consommation des soins","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) \u2022 Evaluer les taux d\u2019incidence, de mortalit\u00e9, de handicap et de r\u00e9cidives des AVC et des AIT. La collaboration avec les autres Registres nationaux et internationaux permet d\u2019effectuer des comparaisons entre les r\u00e9gions et d\u2019\u00e9tudier les facteurs pouvant rendre compte des diff\u00e9rences observ\u00e9es en termes d\u2019incidence et de mortalit\u00e9. \u2022 Evaluer l\u2019\u00e9volution temporelle de ces donn\u00e9es afin d\u2019analyser l\u2019impact des changements d\u00e9mographiques au sein de notre population (en particulier le vieillissement de la population) ainsi que celui des mesures de pr\u00e9vention, des traitements curatifs et des pratiques m\u00e9dicales. Dans cette optique, le Registre Dijonnais se pose en outil d\u2019\u00e9valuation du R\u00e9seau de Soins Bourgogne AVC. \u2022 D\u00e9crire le devenir des patients apr\u00e8s un AVC Objectifs du registre en termes de recherche \u2022 Obtenir des donn\u00e9es \u00e9pid\u00e9miologiques objectives sur les AVC\/AIT au sein d\u2019une population bien d\u00e9finie, pour en \u00e9valuer la fr\u00e9quence et la gravit\u00e9. Poursuivre les collaborations internationales, les renforcer, et en susciter de nouvelles afin de permettre d\u2019effectuer des comparaisons et de mieux identifier les raisons expliquant les diff\u00e9rences observ\u00e9es. \u2022 Identifier de nouveaux facteurs de risque et facteurs pr\u00e9cipitant l\u2019AVC (conditions climatiques, conditions environnementales, contexte socio-\u00e9conomique, etc\u2026) et \u00e9valuer l\u2019impact de la mise en place de mesures pr\u00e9ventives sur l\u2019\u00e9volution de l\u2019incidence de la maladie. \u2022 Identifier les facteurs associ\u00e9s \u00e0 un mauvais pronostic vital, fonctionnel, cognitif, et g\u00e9n\u00e9ral, et mod\u00e9liser des scores pronostiques afin d\u2019identifier pr\u00e9cocement les patients \u00e0 risque d\u2019\u00e9volution d\u00e9favorable. \u2022 D\u00e9velopper des outils de mesure du pronostic adapt\u00e9s aux patients AVC (\u00e9chelles de qualit\u00e9 de vie, \u00e9chelles de fatigue, \u00e9chelles de cognition\u2026) afin de favoriser leur utilisation en pratique courante pour le suivi dans la pratique clinique quotidienne. \u2022 Faire le lien avec la recherche en Sciences Humaines et Sociales afin de mieux appr\u00e9hender les r\u00e9percussions globales de l\u2019AVC sur la vie quotidienne du malade et sa place dans la soci\u00e9t\u00e9. \u2022 Favoriser l\u2019inclusion des malades dans des essais th\u00e9rapeutiques institutionnels et industriels par la confection de cohortes \u00e0 partir du Registre, gage de qualit\u00e9 pour leur suivi. \u2022 Susciter \u00e0 partir de donn\u00e9es observationnelles des hypoth\u00e8ses physiopathologiques et d\u00e9velopper la recherche translationnelle \u00e0 partir de travaux exp\u00e9rimentaux men\u00e9s en dans le cadre de l'Equipe d\u2019Accueil \u00abPhysiopathologie et Epid\u00e9miologie C\u00e9r\u00e9bro-Cardiovasculaires (PEC2)\u00bb afin de les \u00e9valuer et les valider dans le but d\u2019aboutir \u00e0 des th\u00e9rapeutiques nouvelles.","abstract":"","coll_dates":[{"start":"1985-01-01"}],"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\": \"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\": \"Patients repr\u00e9sentant des cas enregistr\u00e9s de : - AVC art\u00e9riel (infarctus, h\u00e9morragies intrac\u00e9r\u00e9brales et h\u00e9morragies m\u00e9ning\u00e9es)  et apparent\u00e9s (Dissection, OACR) - Accidents Isch\u00e9miques Transitoires\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es rapport\u00e9es par le participant de l'\u00e9tude','Donn\u00e9es paracliniques','Donn\u00e9es biologiques','Donn\u00e9es socio-d\u00e9mographiques','Donn\u00e9es paracliniques (hors biologiques) : Imagerie','Donn\u00e9es paracliniques (hors biologiques) : Exploration fonctionnelle']","quality_statement":{"standards":[{"name":"","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\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":"['Via les professionnels d'exercice lib\u00e9ral Via des structures (services ou \u00e9tablissements de sant\u00e9, \u00e9coles, entreprises\u2026)']"}},"coll_mode":["{\"concept\":{\"vocabURI\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Transcription et saisie d\u2019informations dans un enregistrement structur\u00e9\"}","{\"concept\":{\"vocabURI\":\"Interview\",\"vocab\":\"CESSDA\"},\"value\":\"Entretien avec le participant (dont clinique)\"}"],"research_instrument":"Acc\u00e8s restreint sur projet sp\u00e9cifique","sources":[],"target_sample_size":"[1000-10000[ individus","response_rate":"400"},"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":"Toute \u00e9quipe souhaitant travailler sur les donn\u00e9es du Registre est la bienvenue. Elle doit en faire la demande aupr\u00e8s du Professeur Yannick B\u00e9jot, Directeur du Registre Dijonnais des AVC, afin de valider la demande et envisager les modalit\u00e9s de collaboration.","conf_dec":[{"txt":""}],"spec_perm":[{"txt":"","required":""}],"contact":[{"name":""}],"deposit_req":"","cit_req":""},"notes":""}},"additional":{"IsImport":true,"versionLang":"fr","originLang":"fr","autoTranslation":false,"status":"imported","creationDate":"09-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"01-10-2021","isContributorPI":"Non","contributorName":"Yannick BEJOT","contributorAffiliation":"UNIVERSITE BOURGOGNE EUROPE","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":["",""]},"relatedDocument":[{"type":"","title":"Liste des publications dans Pubmed","link":"https:\/\/pubmed.ncbi.nlm.nih.gov\/?term=bejot+y+OR+giroud+m"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)","Public (France)","Public (France)"],"otherFundingAgentType":["","","",""]},"sponsor":{"sponsorType":["Public (France)","Public (France)"],"otherSponsorType":["",""]},"governance":{"committee":"Non"},"collaborations":{"networkConsortium":""},"theme":{"complementaryInformation":"","RareDiseases":""},"activeFollowUp":{"isActiveFollowUp":"Oui","followUpModeOther":""},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":"","allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[],"inclusionGroups":[],"collectionProcess":{"collectionModeDetails":"","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"Ville de Dijon intra-muros (157.000 habitants)"},"dataTypes":{"clinicalDataDetails":"D\u00e9mographiques, facteurs de risque vasculaires, ant\u00e9c\u00e9dents m\u00e9dicaux , traitement, caract\u00e9ristiques de l'AVC, donn\u00e9es des examens paracliniques, donn\u00e9es de prise en charge des patients","biologicalDataDetails":"Bilan lipidique et glyc\u00e9mique, cr\u00e9atinin\u00e9mie, troponine, CRP","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}