KIDSEP - Cohort of Children Monitored After First Episode of Acute Demyelination

Head :
Mikaeloff Yann, E109/U802

Last update : 07/07/2015 | Version : 2 | ID : 60060

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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 Cohort of Children Monitored After First Episode of Acute Demyelination
Sign or acronym KIDSEP
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL n°60060
General Aspects
Medical area Immunology
Neurology
Health determinants Genetic
Keywords multivariate analysis, Health episodes, child, epidemiology
Scientific investigator(s) (Contact)
Name of the director Mikaeloff
Surname Yann
Phone + 33 (0)6 64 31 20 97 ou +33 (0)1 45 21 31 32
Email yann.mikaeloff@bct.aphp.fr
Unit E109/U802
Organization APHP
Collaborations
Funding
Funding status Private
Details Association pour la Recherche sur la Sclérose en Plaques (ARSEP, France)
Governance of the database
Sponsor(s) or organisation(s) responsible APHP
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Cohort study
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. Prospective Inclusion cut-off date: 01/01/2010
Database objective
Main objective General objective: 1. To follow a national cohort of children from their first episode of acute demyelination and monitor them for over 10 years 2. To determine the clinical and radiological risk factors of recurrence (qualified by MS diagnosis) 3. To determine the progression towards disability and its risk factors 4. To participate in a genetic study regarding MS susceptibility 5. Pharmacovigilance (vaccines)
Inclusion criteria Children who have experienced clinical symptoms of acute inflammatory demyelination (A1) between January 1990 and December 2003 before the age of 16.
Population type
Age Infant (28 days to 2 years)
Early childhood (2 to 5 years)
Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Multicentric cohort throughout France (11 centres)
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 01/1990
Date of last collection (YYYY or MM/YYYY) 01/2015
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 493
Data
Database activity Current data collection
Type of data collected Clinical data
Declarative data
Paraclinical data
Clinical data (detail) Direct physical measures
Medical registration
Declarative data (detail) Paper self-questionnaire
Paraclinical data (detail) Imaging
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Procedures
Participant monitoring Yes
Details on monitoring of participants Follow-up duration: 10 years
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://www.ncbi.nlm.nih.gov/pubmed/?term=KIDSEP
Description List of publications in Pubmed
Access
Terms of data access (charter for data provision, format of data, availability delay) Data may not be used by academic teams Data may not be used by industrial teams
Access to aggregated data Access on specific project only
Access to individual data No access

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