{"doc_desc":{"title":"Registre des handicaps de l'enfant de la Haute Garonne (registre qualifi\u00e9 2011-2014)","idno":"FRESH-PEF173-fr","producers":[{"name":"Catherine ARNAUD","affiliation":"UNIVERSITE DE TOULOUSE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF173-fr","IDno":{"metadata_no":[{"agency":"PEF","code":"173"},{"agency":"FReSH","code":"FRESH-PEF173"}]},"title":"Registre des handicaps de l'enfant de la Haute Garonne (registre qualifi\u00e9 2011-2014)","alternate_title":"RHE31"},"study_authorization":{"agency":[{"name":"CNIL"}]},"authoring_entity":[{"type":"investigator","name":"Catherine;ARNAUD","PILabo":"Universit\u00e9 Paul Sabatier \/ UMR 1027 Inserm - Universit\u00e9 Toulouse III","affiliationName":"UNIVERSITE DE TOULOUSE","extlink":[{"title":"ORCID","uri":"0000-0002-4002-802X","role":"pi id"},{"title":"IdRef","uri":"094960003","role":"pi id"},{"title":"SIREN","uri":"938271392","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"catherine.arnaud@univ-tlse3.fr","isContact":"Oui"}],"oth_id":[{"name":"","type":""},{"name":"","type":""}],"production_statement":{"prod_place":"Portail Epid\u00e9miologie France (PEF)","producers":[{"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"}],"funding_agencies":[{"name":"INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (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":"","extlink":[]}]},"distribution_statement":{"contact":[{"name":"Catherine;ARNAUD","email":"catherine.arnaud@univ-tlse3.fr","type":"contact","affiliationName":"UNIVERSITE DE TOULOUSE","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/01ahyrz84","role":"organisation id","title":"ROR"},{"uri":"938271392","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"D\u00e9ficiences neuro-sensorielles s\u00e9v\u00e8res et troubles envahissants du d\u00e9veloppement"}],"topics":[{"topic":"P\u00e9diatrie","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":"Troubles dus \u00e0 l'utilisation de substances psychoactives","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/590211325","title":"CIM-11"}]},{"topic":"D\u00e9terminants socio-d\u00e9mographiques et \u00e9conomiques","vocab":"health determinant"}],"purpose":"Objectifs en terme de sant\u00e9 publique: 1) Surveiller l'\u00e9volution de la pr\u00e9valence des d\u00e9ficiences s\u00e9v\u00e8res et des troubles envahissants du d\u00e9veloppement de l'enfant sur une base g\u00e9ographique 2) D\u00e9crire les caract\u00e9ristiques de ces d\u00e9ficiences s\u00e9v\u00e8res et leurs prises en charge 3) Aider \u00e0 la planification de l'offre m\u00e9dico-sociale d'accueil en \u00e9tablissement et d'accompagnement \u00e0 domicile ou ambulatoire pour une prise en charge ad\u00e9quate des enfants porteurs de d\u00e9ficiences Objectifs en terme de recherche: 1) Progresser dans la connaissance \u00e9tiologique et la recherche des facteurs de risque en mettant en relation les \u00e9v\u00e8nements p\u00e9rinatals et la survenue d'une d\u00e9ficience ou d'un trouble envahissant du d\u00e9veloppement 2) \u00c9valuer les cons\u00e9quences des mesures pr\u00e9ventives ou de d\u00e9pistage mises en \u0153uvre en cours de la grossesse 3) D\u00e9crire et comprendre les modes de vie des enfants en situation de handicap","abstract":"","coll_dates":[{"start":"1986-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Occitanie']","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\": \"Enfance (6 \u00e0 12 ans)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D002648\"\n            }\n        }\n    ],\n    \"level_type_clusion_I\": \"Personnes en situation de handicap\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"Tous les enfants pr\u00e9sentant une des d\u00e9ficiences suivantes \u00e0 5 ans et\\\/ou 8 ans et dont les parents (ou repr\u00e9sentants l\u00e9gaux) r\u00e9sident dans le d\u00e9partement de Haute-Garonne au moment de l'enregistrement quelque soit le lieu de naissance de l'enfant: D\u00e9ficiences motrices (dont les paralysies c\u00e9r\u00e9brales de tout niveau de s\u00e9v\u00e9rit\u00e9) D\u00e9ficiences sensorielles s\u00e9v\u00e8res D\u00e9ficiences intellectuelles  Trisomie 21 Troubles envahissants du d\u00e9veloppement\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Donn\u00e9es cliniques','Donn\u00e9es paracliniques','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"}]},"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\":\"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":"[1000-10000[ individus","response_rate":"2134"},"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":"Acc\u00e8s aux donn\u00e9es possible sur demande \u00e9crite au directeur motivant les objectifs de recherche","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":"16-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"05-06-2014","isContributorPI":"Non","contributorName":"Catherine ARNAUD","contributorAffiliation":"UNIVERSITE DE TOULOUSE","addTeamMember":"","obtainedAuthorization":{"otherAuthorizingAgency":[""]},"relatedDocument":[{"type":"","title":"","link":"http:\/\/research.ncl.ac.uk\/sparcle\/"}],"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Public (France)","Autre"],"otherFundingAgentType":["","",""]},"sponsor":{"sponsorType":["Public (France)"],"otherSponsorType":[""]},"governance":{"committee":""},"collaborations":{"networkConsortium":"Oui"},"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":"Consultation par un m\u00e9decin du registre des dossiers m\u00e9dicaux des enfants, notamment \u00e0 la MDPH (Maison D\u00e9partementale des Personnes Handicap\u00e9es), apr\u00e8s demande de l'accord parental et absence d'opposition des familles","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":"Non"},"geographicalCoverage":{"geoDetail":"Haute-Garonne"},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","isDataInBiobank":"Non","biobankContent":[],"biobankContentOther":"","dataTypeOther":""},"variableDictionnary":{"variableDictionnaryAvailable":"","variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":"","mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[]},"isHealthTheme":"Oui","fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}