ITMO Santé Publique
ITMO Santé Publique
Date de modification : 04/08/2015 | Version : 2 | ID : 62
| Général | |
| Identification | |
| Nom détaillé | Registry of Congenital Malformations in Alsace (Certified Regisrtry) |
| Sigle ou acronyme | REMACA |
| Thématiques générales | |
| Domaine médical |
Rare diseases |
| Déterminants de santé |
Addictions Genetic Occupation Social and psychosocial factors |
| Mots-clés | prenatal diagnosis |
| Responsable(s) scientifique(s) | |
| Nom du responsable | Timbolschi |
| Prénom | Danaluiza |
| danaluiza.timbolschi@chru-strasbourg.fr | |
| Organisme | CHRU Strasbourg |
| Collaborations | |
| Financements | |
| Financements |
Public |
| Précisions | French Institute for Public Health Surveillance - InVS, French National Institute of Health and Medical Research) - INSERM CREGEMES. |
| Gouvernance de la base de données | |
| Organisation(s) responsable(s) ou promoteur | Université de Strasbourg, Faculté de médecine |
| 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 | Method for selecting subjects meeting required inclusion criteria. |
| Objectif de la base de données | |
| Objectif principal |
From an epidemiological standpoint:
1) Determination of frequency (in terms of prevalence) and distribution of congenital malformation; 2) Identification of the risk factors of malformations (discomfort, environment, medications and toxic) 3) Determination of malformation ""clusters"" for decision aids in the event of a significant increase in the prevalence of a malformation type (monitoring-alert); 4) Making data available for epidemiological studies From a public health standpoint 1) Assessment of the impact of health policies in the field of perinatal medicine and the impact of regional obstetric practices; 2) Measuring the effectiveness of the prevention and establishment of support to inform healthcare professionals, especially in the field of teratology; 3) Assessment of healthcare requirements in perinatal medicine (birthing methods and locations); From a clinical standpoint: 1) Locating new malformation associations and even the identification of new symptoms; 2) Determination of modes of genetic disorder transmission; 3) Establishment of interactions among various active partners in prevention, socio-educational care in the region concerned. |
| Critères d'inclusion |
Reported cases of malformations visible at the clinical and visceral examination, as well as identified or non-identified malformation syndromes, including those linked to chromosomal defects until two years old..
Recorded cases in the both Alsace départements and where parents are only residing both Alsace départements. |
| 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 |
Alsace Champagne-Ardenne Lorraine |
| Détail du champ géographique | Two départements in the Alsace region: Bas-Rhin and Haut-Rhin. |
| Collecte | |
| Dates | |
| Année du premier recueil | 2005 |
| 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 | About 700 cases per year since 2005. About 450 cases per year since 2005. |
| 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 Medical registration |
| Données paracliniques, précisions | Radiographies, ultrasounds, scan, MRI, ophthalmologic and ENT assessment. |
| Données biologiques, précisions | Cytogenetic, molecular biology. |
| Données administratives, précisions | Identification data: child (last name, first name, address, date of birth, place of birth, date of death, cause of death); mother (date of birth, place of birth); father (date of birth, place of birth); Socio-demographic data: profession of the mother; profession of the father; consanguinity. |
| Existence d’une biothèque |
No |
| Paramètres de santé étudiés |
Health event/morbidity Health event/mortality Health care consumption and services |
| Consommation de soins, précisions |
Hospitalization Medical/paramedical consultation |
| Modalités | |
| Mode de recueil des données | Active collection from all of the public and private maternity wards in Alsace, from all of Paediatric, Infant Surgery, Genetics, Paediatric Cardiology, Neurosurgery and Ophthalmology departments, from the Multidisciplinary Centre for Prenatal Diagnosis, from cytogenics and foetopathology laboratories. |
| Nomenclatures employées | CIM10 for malformations and diseases, ATC code for medication. |
| Suivi des participants |
Yes |
| Détail du suivi | Verification of the diagnosis, Updating of vital status for reported cases on an average of 6 months to 1 year, as well as the cause of death. |
| Appariement avec des sources administratives |
Yes |
| Sources administratives appariées, précisions | Health certificates for the 8th day, 9th month. |
| Valorisation et accès | |
| Valorisation et accès | |
| Autres informations | The registry is no longer active |
| Accès | |
| Charte d'accès aux données (convention de mise à disposition, format de données et délais de mise à disposition) |
Global data: EUROCAT site.
Individual data: on request. |
| Accès aux données agrégées |
Free access |
| Accès aux données individuelles |
Access on specific project only |
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