REMERA - Rhône Alpes birth defects registry

Head :
Amar Emmanuelle, REMERA9 Quai Jean Moulin690001 LYON

Last update : 05/11/2015 | Version : 2 | ID : 69

print
Print
xml
XML

Export to XML

Please choose the format :

pdf
PDF
xml
CSV (Excel)

Export to CSV

What sections do you want to export ?

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
Select all | Invert selection | No selection

Which version do you want to export ?

send
Send
General
Identification
Detailed name Rhône Alpes birth defects registry
Sign or acronym REMERA
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL N°910397
General Aspects
Medical area Disability/handicap
Gynecology/ obstetrics
Health determinants Addictions
Genetic
Iatrogenic
Intoxication
Lifestyle and behavior
Medicine
Nutrition
Occupation
Pollution
Social and psychosocial factors
Keywords prevalence of congenital malformations, reprotoxic risk factors, antenatal screening, eugenic abortions, perinatality, database on malformations, epidemiology, follow-up, alert, teratogens, genetics
Scientific investigator(s) (Contact)
Name of the director Amar
Surname Emmanuelle
Address 7 rue Ste Catherine
69 001 LYON
Phone + 33 (0)4 78 58 34 84
Email emmanuelle.amar@remera.fr
Unit REMERA9 Quai Jean Moulin690001 LYON
Organization REMERA et CHU DE
Collaborations
Funding
Funding status Public
Details InVS, Conseil Régional Rhône Alpes, Inserm, Afssaps, Registre qualifié de 2009 à 2011
Governance of the database
Sponsor(s) or organisation(s) responsible Registre des Malformations en Rhône Alpes
Organisation status Both
Additional contact
Main features
Type of database
Type of database Morbidity registers
Database objective
Main objective Objectives in terms of public health:
1) Evaluation of the importance of the change in malformations (incidence, factors, appearance of a new malformation or of a new malformation symptom, space-time variations of these incidences)
2) Evaluation of the actions in public health: measure the impact of the actions implemented, especially perinatal screening and also the primary prevention initiatives on the prevalence of malformations and propose orientations for the development of health programs.
3) Alert in the case where a link with a teratogen, whether or not known, is suspected
In terms of research:
1) Highlight the factors of risk of malformation
2) Study their interactions with susceptibilities of a genetic nature
Inclusion criteria The following are included in the registry:
Congenital malformations diagnosed antenatally or postnatally until the end of the 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 Departmental
French regions covered by the database Auvergne Rhône-Alpes
Detail of the geography area Département of Rhône, Isère, Savoie, and Loire
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 01/1973
Size of the database
Size of the database (number of individuals) Greater than 20 000 individuals
Details of the number of individuals 61 000 (in 2012)
Data
Database activity Current data collection
Type of data collected Clinical data
Declarative data
Paraclinical data
Biological data
Administrative data
Clinical data (detail) Direct physical measures
Declarative data (detail) Phone interview
Paraclinical data (detail) Height, weight, BP of mother ; height, weight, head circumference, crown-rump length of the child/fetus
Biological data (detail) triple test, karyotype, glycemia
Administrative data (detail) Identification data (Name, first name, birthday, location, sex)
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 dossiers concerning congenital malformations and their determinants
Participant monitoring No
Links to administrative sources No
Promotion and access
Promotion
Access
Terms of data access (charter for data provision, format of data, availability delay) An annual activity report
Access to the data (depersonalized) is possible, on request
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

Partners - FAQ - Contact - Site map - Legal notices - Administration - Updated on December 15 2020 - Version 4.10.05