RHEOP - Register of Childhood Disabilities and Perinatal Data - Isère et deux Savoie counties

Head :
Cans Christine, Service d'information et informatique médical

Last update : 03/07/2012 | Version : 1 | ID : 168

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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 Register of Childhood Disabilities and Perinatal Data - Isère et deux Savoie counties
Sign or acronym RHEOP
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation 997086
General Aspects
Others (details) Induced therapeutic abortions
Keywords Stillbirth and Induced therapeutic abortions Severe deficiencies of the child
Scientific investigator(s) (Contact)
Name of the director Cans
Surname Christine
Address Pôle d'exploitation SIIM, pavillon Taillefer, CHU Grenoble, BP 217 38043 Grenoble Cedex 09
Phone 04 76 76 94 03
Email CCans@chu-grenoble.fr
Unit Service d'information et informatique médical
Organization CHU de
Collaborations
Funding
Funding status Public
Details Institut de veille sanitaire - InVS Institut national de la santé et de la recherche médicale - INSERM Conseils Généraux de l'Isère, de la Savoie et de la Haute-Savoie
Governance of the database
Sponsor(s) or organisation(s) responsible Université de Grenoble Joseph Fourier
Organisation status Public
Sponsor(s) or organisation(s) responsible Conseils Généraux de l'Isère, de la savoie et de la Haute-Savoie
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
Database objective
Main objective In the area of public health:
(1) monitor the change in the prevalence of severe deficiencies in children on a geographical basis (three counties starting in 2005)
(2) monitor the change in the rate of stillbirths and more particularly of the prevalence of induced abortions for medical reasons over the same geographical base
(3) describe the educative and medical care
(4) assist in the planning of needs, in order to ensure optimal care for these children
In the area of research:
(1) encourage analytical surveys that are specific to each type of deficiency, or that cover the associated deficiencies
(2) identify the etiologies of the deficiencies and serious perinatal events
(3) Collect information on the perinatal events that may be in relation with the occurence of deficiencies
Inclusion criteria Deficiency pool: All children under the age of 7 years having at least one main severe deficiency and residing in one of the départements of Isère, Savoie or Haute-Savoie.
Perinatal pool: serious perinatal events such as cases of stillbirth and abortion occurring each year for the women domiciled in one of these three départements.
Population type
Age Newborns (birth to 28 days)
Infant (28 days to 2 years)
Childhood (6 to 13 years)
Population covered Sick population
Gender Male
Woman
Geography area Regional
French regions covered by the database Auvergne Rhône-Alpes
Detail of the geography area Isère, Savoie, Haute Savoie
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 1991
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 2717 : several deficiency 2414 : stillbirths 2317 : medical termination of pregnancy
Data
Database activity Current data collection
Type of data collected Clinical data
Administrative data
Clinical data (detail) Direct physical measures
Administrative data (detail) profession of the parents, canton and county of residence, disability rate
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Health care consumption and services
Quality of life/health perception
Care consumption (detail) Hospitalization
Procedures
Data collection method A systematic collection of information intended to identify the cases is conducted with: (1) the Départementale Bureau for Autonomy (MDA) and the départementale bureaus for people with disabilities (MDPH) of the départements involved (2) clinical departments of neonatology, pediatrics, maternity wards and specialized departments using medical dossiers (3) medical information departments (4) early-action medical centers (5) child psychiatry sectors (6) PMIs and networks of liberal pediatricians (7) cytogenetics departments (8) Multi-disciplinary centers for prenatal diagnostics (CPDNP) (9) anatomopathology laboratories
Participant monitoring No
Links to administrative sources Yes
Linked administrative sources (detail) PMSI MDPH
Promotion and access
Promotion
Access
Terms of data access (charter for data provision, format of data, availability delay) Annual report published every year, accessible of the RHEOP website
Scientific publications
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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