CEREDIH - French National Registry for Primary Immunodeficiencies

Head :
Mahlaoui Nizar, CEREDIH Centre de référence Déficits Immunitaires Héréditaires
Fischer Alain, CEREDIH Centre de référence Déficits Immunitaires Héréditaires INSERM U768 (Développement normal et pathologique du système immunitaire) Fondation Imagine

Last update : 04/03/2012 | Version : 1 | ID : 184

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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 French National Registry for Primary Immunodeficiencies
Sign or acronym CEREDIH
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL n°1165361 (28/04/2006)
General Aspects
Medical area Immunology
Rare diseases
Health determinants Genetic
Others (details) all pathologies characterized by qualitative and/or quantitative abnormalities of the immune system, bringing about a increased susceptibility to infections, autoimmunity and cancer
Keywords primary immunodeficiency, rare disease, immune system, autoimmunity, genetic anomaly, infection, cancer
Scientific investigator(s) (Contact)
Name of the director Mahlaoui
Surname Nizar
Address Groupe Hospitalier Necker-Enfants malades - CEREDIH Carré Necker - Porte N3 - 1er étage - 149 rue de Sèvres - 75743 Paris Cedex 15
Phone + 33 (0)1 44 49 46 22
Email nizar.mahlaoui@nck.aphp.fr
Unit CEREDIH Centre de référence Déficits Immunitaires Héréditaires
Organization APHP, Groupe Hospitalier Necker enfants
Name of the director Fischer
Surname Alain
Address Groupe Hospitalier Necker-Enfants malades
Phone + 33 (0)1 44 49 46 22
Email alain.fischer@nck.aphp.fr
Unit CEREDIH Centre de référence Déficits Immunitaires Héréditaires
INSERM U768 (Développement normal et pathologique du système immunitaire)
Fondation Imagine
Organization APHP
Collaborations
Funding
Funding status Mixed
Details Ministry of Health, Co-Funding by pharmaceutical firms and Patients' association donations
Governance of the database
Sponsor(s) or organisation(s) responsible APHP
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 The main objective of the French national registry for primary immunodeficiency (PID) is to list all patients - living or deceased - who are suffering or have suffered from these diseases in France so as to estimate and monitor their prevalence, incidence, demographic characteristics, age at diagnosis, period of time between first symptoms and diagnosis, survival and mortality.
Inclusion criteria Alive and deceased patients with primary immunodeficiency in France
Population type
Age Newborns (birth to 28 days)
Infant (28 days to 2 years)
Early childhood (2 to 5 years)
Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Adulthood (19 to 24 years)
Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Elderly (65 to 79 years)
Great age (80 years and more)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Metropolitan France and overseas departments/territories
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 01/2006
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 664 en 2006, 1370 en 2007, 815 en 2008 et 411 en 2009, ce qui faisait un total de 3360 cas au 1er janvier 2010 Nombre de nouveaux cas attendus par an dans cette population estimé à : 160 (fréquence : 1/5000 et 800 000 naissances/an) 664 in 2006, 1,370 in 2007, 815 in 2008 and 411 in 2009, making a total of 3,360 cases as at January 1st 2010. Number of new cases expected per year in this population estimated to be: 160 (frequency: 1/5,000 and 800,000 births/year)
Data
Database activity Current data collection
Type of data collected Clinical data
Paraclinical data
Biological data
Administrative data
Clinical data (detail) Direct physical measures
Paraclinical data (detail) Imaging, Pathology
Biological data (detail) CBC, Ig quantitation assay, Lymphocyte phenotyping, Genetic analyses
Administrative data (detail) Follow-up hospital, Contact physician, Competence center, Patient consent, Place of residence
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Quality of life/health perception
Procedures
Participant monitoring Yes
Details on monitoring of participants Case follow-up is carried out once a year.
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://www.ceredih.fr
Access
Terms of data access (charter for data provision, format of data, availability delay) Annual national meeting, website, mail contact for CEREDIH manager
If a team wished to work on the registry's data, the project would have to be submitted to the CEREDIH scientific advisory board.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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