History and Funding
The Registry was established in 2001 and has contributed data to EUROCAT from 2002 onwards. The Registry was funded by a private organisation – Conseil General du Department (Provincial Council) until 2005 and since 2006 by a public organisation: Agence Régionale d'Hospitalisation (ARH) regional agency for hospital care, and is run under guidance from a steering committee. Its qualification was obtained from INSERM and INVS since November 18th 2008 and the registry was supported by InVS and INSERM since 2009.
The main aims of the Registry are to produce prevalence statistics, audit prenatal screening, assess reported clusters of environmental exposures and to detect new teratogenic exposures.
The Registry is population-based III which is all mothers delivering in Isle of Reunion excluding non-residents. The Registry covers an average of 14,650 births per year.
Sources of Ascertainment
Reporting is voluntary. Notification of cases to the registry comes from hospitals and other private institutions. Ascertainment is assisted by active searching of patient notes by Registry staff.
Ascertainment of cases by hospital doctors is thought to be virtually 100%. Sources include maternity units, paediatric departments, prenatal screening, pathology labs, cytogenetic labs, medical genetics, paediatric surgery and cardiology units. Cases are registered if diagnosed before birth, at birth or during the first year of life. All malformed babies are followed up until 1 year of age, specially cases with cardiac and urinary malformations, but ascertainment of these cases may be incomplete if the malformation is not prenatally diagnosed or the case is not seen at a hospital.
Maximum Age at Diagnosis
Up to 1 year of age.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy has been legal in Isle of Reunion since 1975 and recorded by the Registry since 2002. There is no upper limit on gestation age at termination. Information on terminations are provided by official legal pluridisciplinary prenatal diagnosis centres. There is a national prenatal screening policy.
Stillbirth and Early Fetal Deaths
The official stillbirth definition is: gestational age >20 weeks of pregnancy. Gestational age of 14 weeks is the lowest age to be included as a fetal death/spontaneous abortion in the Register. Autopsies maybe carried out on stillbirths, early fetal deaths and termination of pregnancies.
Exposure Data Availability
Exposure data (occupation of mother, assisted conception, illness before and during pregnancy, drug use throughout pregnancy) are routinely recorded to a good degree of completeness and accuracy.
Denominators and Controls Information
National birth statistics are obtained from INSEE. Denominators can be provided both by maternal age and monthly distribution. Information is not available on controls.
Ethics & Consent
We propose to parents a consent before registration, with a respect of anonymous case and without ethic approval. Informed consent is asked.
Address for Further Information
Dr Hanitra RANDRIANAIVO
Scientific director of the registry
Centre Hospitalier Universitaire Sud Réunion
ILE DE LA REUNION
Tel: 33 260 35 92 56 / 33 260 35 97 71
Fax: 33 260 35 92 48
Last updated: 04.07.2019