Date de modification : 05/10/2015 | Version : 3 | ID : 231
Général | |
Identification | |
Nom détaillé | Ile de la Réunion Congenital anomalies register |
Numéro d'enregistrement (ID-RCB ou EUDRACT, CNIL, CPP, etc.) | autorisation n°909410 |
Thématiques générales | |
Domaine médical |
Rare diseases |
Pathologie, précisions | Teratovigilance, Toxicovigilance |
Déterminants de santé |
Addictions Genetic Iatrogenic Intoxication Nutrition Occupation Pollution Social and psychosocial factors |
Mots-clés | congenital abnormalities, prenatal diagnosis, alert, toxic risk factors to reproduction, teratogens, genetics, database, epidemiology, surveillance |
Responsable(s) scientifique(s) | |
Nom du responsable | RANDRIANAIVO |
Prénom | Hanitra |
Adresse | Unité de Génétique médicale du CHR Sud Réunion- BP350 - 97448 Saint Pierre Cedex - La REUNION |
Téléphone | 02 62 35 92 56 |
hanitra.randrianaivo@chu-reunion.fr | |
Laboratoire | Unité de Génétique médicale du CHR Sud Réunion |
Organisme | CHR Site de St |
Collaborations | |
Financements | |
Financements |
Public |
Précisions | Institut de veille sanitaire - InVSInstitut national de la santé et de la recherche médicale - INSERMAgence régionale de santé - ARS |
Gouvernance de la base de données | |
Organisation(s) responsable(s) ou promoteur | CHU Réunion- ARS |
Statut de l’organisation |
Secteur Public |
Statut de l’organisation | |
Organisation(s) responsable(s) ou promoteur | Inserm |
Statut de l’organisation |
Secteur Public |
Organisation(s) responsable(s) ou promoteur | InVS |
Statut de l’organisation |
Secteur Privé |
Existence de comités scientifique ou de pilotage |
Yes |
Contact(s) supplémentaire(s) | |
Caractéristiques | |
Type de base de données | |
Type de base de données |
Morbidity registers |
Informations complémentaires concernant la constitution de l'échantillon |
Method for selecting subjects having the required inclusion criteria.
Several sources are used to identify cases in which mothers live on Reunion Island and for which the malformation diagnosis is made either before the birth or after - up until the end of the infant's first year of life: - Public and private maternity wards throughout the island - Neonatology and multidisciplinary intensive care departments - Departments for surgery in children and pediatric cardiology - Neurosurgery and neuroradiology departments - Hospital Medical Information Departments - Cytogenetics laboratory and medical genetics departments - Fetopathology laboratory - Multidisciplinary Centers for Prenatal Diagnosis |
Objectif de la base de données | |
Objectif principal |
1. Carry out epidemiological surveillance of congenital abnormalities in the population of Reunion Island (determination of prevalence and distribution) and identification of malformation risk factors (genetic, environmental, related to drugs or toxins); with the purpose of sounding the alert when any environmental teratogenic agents become evident (e.g. drug, pesticide exposure, industrial accident) at local, national and international level. Should clusters of malformations be detected (surveillance-alert of an increase in prevalence over time of a given malformation), checks must be made regarding recording bias before conducting further investigations. Then specific risk factors will be sought.
2. Evaluate the impact of public health initiatives in the population: - Evaluation of prenatal screening of malformations is a fundamental objective for the registry, with participation in the field of perinatal medicine and local obstetric practices - Implementation and evaluation of prevention initiatives are also important, such as the primary prevention of neural tube closing defects via folic acid supplements before conception. 2. Identification of possible new syndromes and supply of new information for genetic counseling of families. e-transmission method, genetic heterogeneity, genetic susceptibility factor. |
Critères d'inclusion |
The Registry lists cases of malformation and chromosomal abnormality among living births, still births (from 22 weeks of amenorrhea or more), which are diagnosed within or at one year, as well as therapeutic abortions irrespective of the gestational age.
The following are included in the registry: Congenital malformations diagnosed before or after the birth - up until the end of the infant's first year of life. |
Type de population | |
Age |
Newborns (birth to 28 days) Infant (28 days to 2 years) |
Population concernée |
Sick population |
Sexe |
Male Woman |
Champ géographique |
Regional |
Régions concernées par la base de données |
La Réunion |
Détail du champ géographique | Reunion department |
Collecte | |
Dates | |
Année du premier recueil | 2002 |
Taille de la base de données | |
Taille de la base de données (en nombre d'individus) |
[1000-10 000[ individuals |
Détail du nombre d'individus | 2002-2009: 3046 cas (source EUROCAT)2009 : 419 cas (source EUROCAT) |
Données | |
Activité de la base |
Current data collection |
Type de données recueillies |
Clinical data Administrative data |
Données cliniques, précisions |
Direct physical measures |
Données administratives, précisions | Identification data:- Date of birth- Place of birth- Postcode (place of residence)Sociodemographic data:- Sex of child- Mother's age- Geographical origin of parents- Parents' profession |
Existence d’une biothèque |
No |
Paramètres de santé étudiés |
Health event/morbidity Health event/mortality |
Modalités | |
Mode de recueil des données | Active collection: survey takers go to the departments and record in their databases all of the information contained in the medical records concerning congenital malformations and their determining factors |
Nomenclatures employées | ICD10 for malformations and diseases |
Suivi des participants |
Yes |
Détail du suivi | Vital status |
Appariement avec des sources administratives |
Yes |
Sources administratives appariées, précisions | Request made by health institutions to medical information departments. |
Valorisation et accès | |
Valorisation et accès | |
Accès | |
Existence d’un document qui répertorie les variables et les modalités de codage |
Yes |
Charte d'accès aux données (convention de mise à disposition, format de données et délais de mise à disposition) |
Publications and reports. Access to overall data: EUROCAT website: http://www.eurocat-network.eu/
Access to individual (anonymized) data possible by request. |
Accès aux données agrégées |
Free access |
Accès aux données individuelles |
Access on specific project only |
Partenaires - F.A.Q. - Contact - Plan du site - Mentions légales - Administration - PEF-HD - Mis à jour le 15 décembre 2020 - Version 4.10.05