International Clearinghouse for Birth Defects
Surveillance and Research.
International Clearinghouse for Birth Defects
Surveillance and Research.
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ICBDSR
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Program details
Generla info
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History:
The registry was created in 1981 and it has been a member of the ICBDSR as well as EUROCAT since 1982. The registry is part of a research unit of INSERM (National Institute of Health and Medical Research).
Size and coverage::
Until 2005, the registry population included all women residing in greater Paris (Paris and its surrounding suburbs) who delivered in Paris maternity units. Beginning in 2006, the Paris population data for ICBDSR include only women residing in Paris and delivering in a Parisian maternity unit (N ~ 27,000). The estimation of the coverage of the registry is around 95%.
Legislation and funding:
The registry has been officially recognised by the French National Committee of Registries, and regularly renewed, most recently in 2017 for five years (2017-2021). The activities of the Registry are supported by grants from INSERM and Institut de la Veille Sanitaire (Institute for Health Surveillance).
Sources of ascertainment:
Notification to the registry is voluntary. Reports are actively collected from delivery units, paediatric departments, cytogenetic laboratories, and pathology departments. Case information is also received from the health certificates of the first week of life and this is the maximum age at diagnosis. Birth certificates include notification of congenital anomaly and are used as a source of notification. All terminations of pregnancy regardless of the gestational age at termination are registered. Stillbirths of 22 weeks after the last menstrual period or more are registered.
Exposure information:
Information on maternal drug use, maternal and paternal diseases and occupations, outcome of previous pregnancies, is available for the malformed cases.
Background information:
Background data on births are available from the National Institute of Statistics (INSEE).
Addresses and staff:
Babak Khoshnood, MD, PhD, Programme Director,Paris Registry of Congenital Malformations (REMAPAR),INSERM U1153,Maternité de Port-Royal,53 av. de l'Observatoire,75014 PARIS,France,
Phone:
Fax:
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