- Paris Registry of Congenital Malformations

Head :
Khoshnood Babak, U953

Last update : 12/20/2011 | Version : 1 | ID : 221

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name Paris Registry of Congenital Malformations
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation 97010
General Aspects
Medical area Rare diseases
Others (details) congenital malformation, chromosomal defects, genetic syndromes
Keywords congenital defects prenatal diagnosis
Scientific investigator(s) (Contact)
Name of the director Khoshnood
Surname Babak
Address Inserm U953, Hôpital Saint Vincent de Paul, 75014 Paris
Phone 01 42 34 55 87
Email babak.khoshnood@inserm.fr
Unit U953
Organization Inserm
Collaborations
Funding
Funding status Public
Details Institut de veille sanitaire - InVS Institut national de la santé et de la recherche médicale - INSERM
Governance of the database
Sponsor(s) or organisation(s) responsible InVS
Organisation status Public
Sponsor(s) or organisation(s) responsible Inserm
Organisation status Public
Additional contact
Main features
Type of database
Type of database Morbidity registers
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Selection of subjects having the required inclusion criteria
Several sources are used to identify cases:
- AP-HP maternity wards
- Private non-profit maternity wards
- Clinics operating for profit (maternity wards)
- Paris DDASS
- Neonatology services
- Versatile intensive care services
- Pediatric SMUR (mobile emergency units)
- Cytogenics services
- Foetopathology services
Database objective
Main objective 1. Provide epidemiological surveillance of congenital defects in the Parisian population, with the objective of an alert faced with any teratogens from the environment (e.g.: medication, industrial accident), and this, on a local, national and international scale. In the event of an abnormal change in the frequency of a defect, additional investigations are conducted, with a search for special risk factors, and also recording or recruiting bias that can result in a false alarm.
2. Assess in the population the impact of the health initiatives:
- Evaluating the prenatal screening of malformations is a basic objective of the registry,
and this even more so as this screening has developed substantially in France since the
1980s.
- Evaluating preventive initiatives is also important, and especially that of the impact of the primary prevention policy of neural tube defects by periconceptional folic acid supplementation, implemented in France starting in the year 2000.
3. Conduct studies in collaboration with specialized clinical services, in particular for assessing in the population the future of children who carry certain incapacitating malformations.
4. Contribute to etiological research, in particular within the framework of collaborative and multi-center studies. This can entail case/control studies or cohorts set up for particular research questions.
Inclusion criteria The Registry includes the cases of chromosomal anomalies and structural birth defects among live births, and the still-born (22 weeks of amenorrhea or more), as well as pregnancy terminations for fetal anomalies regardless of the gestational age at termination.
Population type
Age Newborns (birth to 28 days)
Population covered Sick population
Gender Male
Woman
Geography area Regional
French regions covered by the database Île-de-France
Detail of the geography area Paris and Petite Couronne (92, 93, 94)
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 1981
Date of last collection (YYYY or MM/YYYY) 2011
Size of the database
Size of the database (number of individuals) Greater than 20 000 individuals
Details of the number of individuals 1981-2008: more than 34 000 cases 2008 : 1409 cases
Data
Database activity Data collection completed
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 - Postal code (place of residence) Socio-demographic data: - Sex of the child - Age of the mother - Geographical origin of the parents - Parental occupation
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Procedures
Data collection method active
Participant monitoring No
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://www.u953.idf.inserm.fr/page.asp?page
Access
Terms of data access (charter for data provision, format of data, availability delay) publications, reports, summaries - access to anonymous data is possible with a study protocol after approval by the Registry team and Inserm Unit 953
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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