ITMO Santé Publique
ITMO Santé Publique
Date de modification : 05/10/2015 | Version : 3 | ID : 230
| Général | |
| Identification | |
| Nom détaillé | Registry of Congenital Malformations in Auvergne (Certified Registry 2012-2015) |
| Sigle ou acronyme | CEMC-Auvergne |
| Numéro d'enregistrement (ID-RCB ou EUDRACT, CNIL, CPP, etc.) | 1387396 |
| Thématiques générales | |
| Domaine médical |
Disability/handicap Pediatrics Rare diseases |
| Déterminants de santé |
Addictions Genetic Iatrogenic Lifestyle and behavior Medicine |
| Mots-clés | prenatal diagnosis |
| Responsable(s) scientifique(s) | |
| Nom du responsable | Perthus |
| Prénom | Isabelle |
| Adresse | Service de génétique, CHU Estaing, 1 place Lucie Aubrac 63 003 cédex 1 |
| Téléphone | + 33 (0)4 73 34 19 32 |
| iperthus@chu-clermontferrand.fr | |
| Organisme | CEMC-Auvergne |
| Collaborations | |
| Financements | |
| Financements |
Mixed |
| Précisions | Regional Health Agency - ARS - French Institute for Public Health Surveillance - InVS -French National Institute of Health and Medical Research - INSERM, private donations. |
| Gouvernance de la base de données | |
| Organisation(s) responsable(s) ou promoteur | CHU de Clermont-Ferrand |
| Statut de l’organisation |
Secteur Public |
| 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 | Selection of subjects having the required inclusion criteria:- Public and private maternity wards in the Auvergne region- Multidisciplinary center for prenatal diagnosis- Medical and surgical pediatric departments- Cardiology departments- Maxillo-facial surgery- Pediatric urology- Public and private cytogenetics laboratories- Anatomopathology laboratory- Mother and child protection centers (PMIs)- Medical information departments (DIMs) |
| Objectif de la base de données | |
| Objectif principal |
The registry's primary objective is to conduct epidemiological surveillance of congenital malformations
in Auvergne, with a role of sounding the alert when any environmental teratogenic agents become evident. With the development of prevention measures - particularly in the field of prenatal diagnosis - this surveillance-alert mission has gradually been extended to include an essential role in evaluating the impact of public health policies with regards to perinatal care on the population. The registry also helps to improve knowledge in the field of malformations by collaborating on studies with specialist clinical departments (particularly genetic and foetal medicine departments) and by being involved in the Multidisciplinary Center for Prenatal Diagnosis in Clermont- Ferrand (the registry's data provides food for thought from obstetricians on the meaning and action to take when certain malformations are observed during prenatal diagnosis). Lastly, the registry's data informs healthcare stakeholders and the public authorities about congenital malformations and chromosomal abnormalities. |
| Critères d'inclusion | All malformed children are listed, whether stillborn or a live birth after a pregnancy of at least 22 weeks of amenorrhoea, or in the event of therapeutic abortion due to foetal malformation, regardless of term. For children who are born alive, the malformation diagnosis must have been made before the end of their first year of life (infants may be recorded up to 12 months after their birth). All types of malformation are included, whether these concern isolated or polymalformative syndromes, whether or not identified, with normal or abnormal karyotype. The only types to be excluded are inborn metabolic errors and minor malformations or deformations (snapping hips without real dislocation, deformed feet, small superficial naevi or angiomas less than 4cm2, inguinal hernia, umbilical hernia not requiring surgery, isolated persistent ductus arteriosus in premature infants weighing less than 2.5kg, hypertrophic pyloric stenosis, single umbilical artery, uni- or bilateral ectopic testis). |
| 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 |
Auvergne Rhône-Alpes |
| Détail du champ géographique | Auvergne |
| Collecte | |
| Dates | |
| Année du premier recueil | 1983 |
| Taille de la base de données | |
| Taille de la base de données (en nombre d'individus) |
[10 000-20 000[ individuals |
| Détail du nombre d'individus | 10 145 patients (1983-2011) |
| Données | |
| Activité de la base |
Current data collection |
| Type de données recueillies |
Clinical data Paraclinical data Biological data Administrative data |
| Données cliniques, précisions |
Direct physical measures |
| Données paracliniques, précisions | MRI, scan, radiographies, ultrasounds (prenatal, foetal echocardiography, in post-natal stages: urinary tracts, cardio, etc.). |
| Données biologiques, précisions | cytogenetic examinations, maternal serum markers. |
| Données administratives, précisions | Identification data. |
| Existence d’une biothèque |
No |
| Paramètres de santé étudiés |
Health event/morbidity Health event/mortality |
| Modalités | |
| Mode de recueil des données | primarily active +/- passive. |
| Nomenclatures employées | ICD 10, ATC. |
| Suivi des participants |
Yes |
| Détail du suivi | Vital status:The vital status is reported systematically when each case is being registered. The following are distinguished: - children who are alive when the report is made to the registry - therapeutic abortions before 22 weeks of amenorrhoea- therapeutic abortions after 22 weeks of amenorrhoea- fetal deaths in utero- infants who have died (in the first 8 days of life, between 8 and 28 days or after 28 days) |
| Appariement avec des sources administratives |
No |
| Valorisation et accès | |
| Valorisation et accès | |
| Lien vers le document | http://tinyurl.com/PUBMED-CEMC |
| Description | Liste des publications dans Pubmed |
| Lien vers le document | http://tinyurl.com/HAL-CEMC |
| Description | Liste des publications dans HAL |
| Accès | |
| Charte d'accès aux données (convention de mise à disposition, format de données et délais de mise à disposition) | By request to the scientist in charge. |
| Accès aux données agrégées |
Access on specific project only |
| Accès aux données individuelles |
Access on specific project only |
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