{"doc_desc":{"title":"Etude longitudinale sur des jeunes adultes atteints d'autisme : trajectoires d\u00e9veloppementales de l'enfance \u00e0 l'\u00e2ge adulte, facteurs li\u00e9s \u00e0 l'\u00e9volution","idno":"FRESH-PEF5642-fr","producers":[{"name":"Amaria BAGHDADLI","affiliation":"CENTRE HOSPITALIER UNIVERSITAIRE DE MONTPELLIER (CHU)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF5642-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"5642"},{"agency":"FReSH","code":"FRESH-PEF5642"}]},"title":"Etude longitudinale sur des jeunes adultes atteints d'autisme : trajectoires d\u00e9veloppementales de l'enfance \u00e0 l'\u00e2ge adulte, facteurs li\u00e9s \u00e0 l'\u00e9volution","alternate_title":"EpiTED"},"study_authorization":{"agency":[{"name":"CNIL"},{"name":"ANSM"},{"name":"CPP"}]},"authoring_entity":[{"name":"Amaria;BAGHDADLI","firstname":"Amaria","lastname":"BAGHDADLI","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00mthsf17","role":"organisation id"},{"title":"SIREN","uri":"263400160","role":"organisation id"}],"email":"a-baghdadli@chu-montpellier.fr","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE MONTPELLIER (CHU)","PILabo":"CHU de Montpellier \/ CESP INSERM U 1178","isContact":true}],"oth_id":[{"name":"","type":""},{"name":"","type":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"name":"CENTRE HOSPITALIER UNIVERSITAIRE DE MONTPELLIER (CHU)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00mthsf17","role":"sponsor id"},{"title":"SIREN","uri":"263400160","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":"AGENCE NATIONALE DE LA RECHERCHE (ANR)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/00rbzpz17"},{"title":"SIREN","uri":"130002504"}]},{"name":"FONDATION D ENTREPRISE ORANGE","extlink":[{"title":"SIREN","uri":"391872363"}]},{"name":"MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/01wp0c315"},{"title":"SIREN","uri":"130016546"}]}]},"distribution_statement":{"contact":[{"name":"Amaria;BAGHDADLI","lastname":"BAGHDADLI","firstname":"Amaria","type":"contact","email":"a-baghdadli@chu-montpellier.fr","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE MONTPELLIER (CHU)","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/00mthsf17","role":"organisation id","title":"ROR"},{"uri":"263400160","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"trajectoires d\u00e9veloppementales"},{"keyword":"Cohorte"},{"keyword":"autisme"},{"keyword":"qualit\u00e9 de vie"}],"topics":[{"topic":"Psychiatrie","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/3de50dee-da1c-4791-a386-56bca24a5fed"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D011570"}]},{"topic":"Troubles neurod\u00e9veloppementaux","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1516623224","title":"CIM-11"}]},{"topic":"D\u00e9terminants socio-d\u00e9mographiques et \u00e9conomiques","vocab":"health determinant"},{"topic":"D\u00e9terminants biologiques : Pr\u00e9dispositions g\u00e9n\u00e9tiques","vocab":"health determinant"},{"topic":"D\u00e9terminants comportementaux","vocab":"health determinant"},{"topic":"D\u00e9terminants biologiques","vocab":"health determinant"}],"purpose":"Objectif principal : Etude des trajectoires \u00e9volutives d'une cohorte de jeunes adultes atteints d\u2019autisme suivis prospectivement depuis l'enfance (suivi d\u00e9j\u00e0 effectu\u00e9 sur une dur\u00e9e totale de 10 ans), et recherche de facteurs de risque \u00e9volutifs (cliniques ou biologiques). Objectif secondaire : D\u00e9crire les caract\u00e9ristiques de cette population de jeunes adultes atteints d\u2019autisme sur les plans : clinique, m\u00e9dical, du d\u00e9veloppement, de l\u2019environnement social et familial et \u00e9valuer le lien entre un score g\u00e9n\u00e9tique (d\u00e9velopp\u00e9 par IntegraGen) et les trajectoires \u00e9volutives mises en \u00e9vidence lors du suivi effectu\u00e9 sur 10 ans et identifier parmi les SNPs (du panel d\u00e9velopp\u00e9 par IntegraGen) ceux qui ont une valeur pr\u00e9dictive de la trajectoire donn\u00e9e.","abstract":"","coll_dates":[{"start":"1997-01-01","end":"2015-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"","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\": \"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    \"level_type_clusion_I\": \"Patients\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Crit\u00e8res d'inclusion : - Jeunes adultes atteints d\u2019autisme  - Patients pr\u00e9c\u00e9demment inclus dans la cohorte constitu\u00e9e en 1997\\\/1999 dans le cadre du PHRC 96\\\/97 et ayant \u00e9t\u00e9 suivis pendant 10 ans . - Patients majeurs (age sup\u00e9rieure ou \u00e9gale \u00e0 18 ans)\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es rapport\u00e9es par le participant de l&#x27;\u00e9tude','Donn\u00e9es biologiques']","quality_statement":{"standards":[{"name":"['CIM 10']","committee":"","governance":""}],"other_quality_statement":"['La base de donn\u00e9es a \u00e9t\u00e9 d\u00e9velopp\u00e9e avec le logiciel clinsight permettant un contr\u00f4le de donn\u00e9es automatique au moment de la saisie et avant le gel de la base.']"}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Ev\u00e9nements de sant\u00e9\/morbidit\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 des structures (services ou \u00e9tablissements de sant\u00e9, \u00e9coles, entreprises\u2026)']"}},"coll_mode":["{\"concept\":{\"vocabURI\":\"SelfAdministeredQuestionnaire\",\"vocab\":\"CESSDA\"},\"value\":\"Questionnaire auto-administr\u00e9\"}","{\"concept\":{\"vocabURI\":\"Transcription\",\"vocab\":\"CESSDA\"},\"value\":\"Transcription et saisie d\u2019informations dans un enregistrement structur\u00e9\"}"],"research_instrument":"Acc\u00e8s restreint sur projet sp\u00e9cifique","sources":[],"target_sample_size":"< 500 individus","response_rate":"152"},"method_notes":"Etude observationnelle","study_class":"Inconnu","notes":[{"subject":"research type","values":["Etude observationnelle"]}]},"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":"L&#x27;acc\u00e8s aux donn\u00e9es de la base est soumis \u00e0 l&#x27;accord du responsable scientifique et du promoteur de l&#x27;\u00e9tude","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":"18-03-2013","lastUpdatedAuto":null,"lastUpdatedManual":"25-10-2017","isContributorPI":false,"contributorName":"Amaria BAGHDADLI","contributorAffiliation":"CENTRE HOSPITALIER UNIVERSITAIRE DE MONTPELLIER (CHU)","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":["","",""]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/www.autisme-ressources-lr.fr\/epited"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Priv\u00e9 \u00e0 but non lucratif","Public (France)"],"otherFundingAgentType":["","",""]},"sponsor":{"sponsorType":["Public (France)"],"otherSponsorType":[""]},"governance":{"committee":false},"collaborations":{"networkConsortium":true},"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":"Recueil des donn\u00e9es cliniques sur un cahier d'observation. Saisie manuelle du cahier d'observation et des Auto-questionnaires sur une base de donn\u00e9es.","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"Les patients ont \u00e9t\u00e9 inclus \u00e0 partir de 46 centres r\u00e9partis sur le territoire national."},"dataTypes":{"clinicalDataDetails":"Bilan d'\u00e9valuation (ADOS, VINELAND 2, Tests psychom\u00e9triques, EVIP).","biologicalDataDetails":"Pr\u00e9l\u00e8vements salivaires effectu\u00e9s au 3e temps de recueil dans le but d'identifier des marqueurs g\u00e9n\u00e9tiques.","isDataInBiobank":false,"biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":true,"fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}