{"doc_desc":{"title":"Haute Garonne register of childhood disabilities (qualified register)","idno":"FRESH-PEF173-en","producers":[{"name":"Catherine ARNAUD","affiliation":"UNIVERSITE DE TOULOUSE"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF173-en","IDno":{"metadata_no":[{"agency":"PEF","code":"173"},{"agency":"FReSH","code":"FRESH-PEF173"}]},"title":"Haute Garonne register of childhood disabilities (qualified register)","alternate_title":"RHE31"},"study_authorization":{"agency":[]},"authoring_entity":[{"name":"Catherine;ARNAUD","firstname":"Catherine","lastname":"ARNAUD","type":"investigator","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/01ahyrz84","role":"organisation id"},{"title":"SIREN","uri":"938271392","role":"organisation id"}],"email":"catherine.arnaud@univ-tlse3.fr","affiliationName":"UNIVERSITE DE TOULOUSE","PILabo":"Universit\u00e9 Paul Sabatier \/ UMR 1027 Inserm - Universit\u00e9 Toulouse III","isContact":true}],"oth_id":[{"name":"","type":""},{"name":"","type":""}],"production_statement":{"prod_place":"Epidemiology France Portal (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":""}]},"distribution_statement":{"contact":[{"name":"Catherine;ARNAUD","lastname":"ARNAUD","firstname":"Catherine","type":"contact","email":"catherine.arnaud@univ-tlse3.fr","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":"sensory disabilities"},{"keyword":"mobility"},{"keyword":"pervasive developmental disorder"},{"keyword":"development"}],"topics":[{"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":"Disorders due to substance use","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/590211325","title":"CIM-11"}]},{"topic":"Socio-demographic and economic determinants","vocab":"health determinant"}],"purpose":"Objectives in terms of public health: 1) Monitor prevalence rates of severe childhood disabilities over time in a defined geographical area (population-based register) 2) Describe characteristics of these disabilities, medical conditions associated with the main impairment 3) Describe care, assistance and schooling of these children 3) Assist in the planning of medical and social offering suitable for such children (availability of specialized care facilities, home care and outpatient care) Research objectives : 1) Progress in the etiological knowledge and study risk factors especially perinatal risk factors 2) Assess the consequences of preventive or screening measures implemented during pregnancy 3) Describe and understand factors associated with better participation and quality of life of disabled children","abstract":"","coll_dates":[{"start":"1986-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"['Occitanie']","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\": \"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\": \"People with disabilities\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"All children having one of the following impairment at 5 years and\\\/or 8 years and for whom the parents (or legal representatives) reside in Haute-Garonne county at the time of regsitration : Motor impairments (including cerebral paly) Severe sensory impairments Severe intellectual disabilities Down syndroms Pervasive developmental disorders\",\n    \"clusion_E\": \"\"\n}","data_kind":"['Clinical data','Socio-demographic data','Paraclinical data (non-biological) : Imaging','Paraclinical data (non-biological) : Function testing']","quality_statement":{"standards":[{"name":"","committee":"","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Health event\/morbidity"}]},"method":{"data_collection":{"time_method":"","frequency":"","sampling_procedure":"['{\"concept\":{\"vocabURI\":\"Other\",\"vocab\":\"CESSDA\"},\"value\":\"Other\"}']","sample_frame":{"frame_unit":{"unit_type":"['Through organizations (health services or institutions, schools, businesses, etc.)']"}},"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":"[1000-10000[ individuals","response_rate":"2134"},"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":"Access to data is possible upon a writing request submitted to the director, indicating the research objectives","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":"16-12-2010","lastUpdatedAuto":null,"lastUpdatedManual":"05-06-2014","isContributorPI":false,"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)","Other"],"otherFundingAgentType":["","",""]},"sponsor":{"sponsorType":["Public (France)"],"otherSponsorType":[""]},"governance":{"committee":""},"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":"Identification of cases via administrative sources (departmental home for the disabled) and medical sources (neonatal database, neurologic and psychiatric out patient clinics, hospital records) active registration","collectionModeOther":""},"dataCollection":{"inclusionStrategyOther":"","samplingModeOther":"","recruitmentSourceOther":"","otherDocumentation":""},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"Haute-Garonne"},"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"}