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
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
| 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 |
| 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 |
| 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 |
