- Ile de la Réunion Congenital anomalies register
Head :
RANDRIANAIVO Hanitra , Unité de Génétique médicale du CHR Sud Réunion
Last update : 10/05/2015 | Version : 3 | ID : 231
| General | |
| Identification | |
| Detailed name | Ile de la Réunion Congenital anomalies register |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | autorisation n°909410 |
| General Aspects | |
| Medical area |
Rare diseases |
| Pathology (details) | Teratovigilance, Toxicovigilance |
| Health determinants |
Addictions Genetic Iatrogenic Intoxication Nutrition Occupation Pollution Social and psychosocial factors |
| Keywords | congenital abnormalities, prenatal diagnosis, alert, toxic risk factors to reproduction, teratogens, genetics, database, epidemiology, surveillance |
| Scientific investigator(s) (Contact) | |
| Name of the director | RANDRIANAIVO |
| Surname | Hanitra |
| Address | Unité de Génétique médicale du CHR Sud Réunion- BP350 - 97448 Saint Pierre Cedex - La REUNION |
| Phone | 02 62 35 92 56 |
| hanitra.randrianaivo@chu-reunion.fr | |
| Unit | Unité de Génétique médicale du CHR Sud Réunion |
| Organization | CHR Site de St |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | Institut de veille sanitaire - InVSInstitut national de la santé et de la recherche médicale - INSERMAgence régionale de santé - ARS |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | CHU Réunion- ARS |
| Organisation status |
Public |
| Organisation status | |
| Sponsor(s) or organisation(s) responsible | Inserm |
| Organisation status |
Public |
| Sponsor(s) or organisation(s) responsible | InVS |
| Organisation status |
Private |
| Presence of scientific or steering committees |
Yes |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Additional information regarding sample selection. |
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 |
| Database objective | |
| Main objective |
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. |
| Inclusion criteria |
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. |
| Population type | |
| Age |
Newborns (birth to 28 days) Infant (28 days to 2 years) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
Regional |
| French regions covered by the database |
La Réunion |
| Detail of the geography area | Reunion department |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2002 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 2002-2009: 3046 cas (source EUROCAT)2009 : 419 cas (source EUROCAT) |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Administrative data (detail) | 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 |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | 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 |
| Classifications used | ICD10 for malformations and diseases |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Vital status |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | Request made by health institutions to medical information departments. |
| Promotion and access | |
| Promotion | |
| Access | |
| Presence of document that lists variables and coding procedures |
Yes |
| Terms of data access (charter for data provision, format of data, availability delay) |
Publications and reports. Access to overall data: EUROCAT website: http://www.eurocat-network.eu/
Access to individual (anonymized) data possible by request. |
| Access to aggregated data |
Free access |
| Access to individual data |
Access on specific project only |
