PED-BD - Development of an Early Diagnosis Tool for Behcet's Disease in Childhood for International Epidemiological Studies and the Formation of a DNA Bank

Head :
Koné-Paut Isabelle, CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE. CHU BICETRE
Tran Tu-Anh, CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE. CHU BICETRE
Darce Bello Martha, CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE. CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE.

Last update : 07/08/2015 | Version : 2 | ID : 60194

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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 Development of an Early Diagnosis Tool for Behcet's Disease in Childhood for International Epidemiological Studies and the Formation of a DNA Bank
Sign or acronym PED-BD
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL : 14/10/2008
General Aspects
Medical area Internal medicine
Health determinants Genetic
Keywords symptoms, Recurrent oral aphthosis (ROA), genital ulceration (GU), erythema nodosum, folliculitis, pustulous/acneiform lesions, positive pathergy test, uveitis, venous/arterial thrombosis
Scientific investigator(s) (Contact)
Name of the director Koné-Paut
Surname Isabelle
Address 94275 LE KREMLIN BICÊTRE
Phone +33 (0)1 45 21 63 08
Email isabelle.kone-paut@bct.aphp.fr
Unit CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE. CHU BICETRE
Name of the director Tran
Surname Tu-Anh
Address 94275 LE KREMLIN BICÊTRE
Phone +33 (0)1 45 21 32 45
Email tu-anh.tran@bct.aphp.fr
Unit CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE. CHU BICETRE
Name of the director Darce Bello
Surname Martha
Address 94275 LE KREMLIN BICÊTRE
Phone +33 (0)1 45 21 63 08
Email martha.darce@bct.aphp.fr
Unit CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE. CENTRE NATIONAL DE REFERENCE DES MALADIES AUTO-INFLAMMATOIRES. RHEUMATOLOGIE PEDIATRIQUE. SERVICE DE PEDIATRIE GENERALE.
Collaborations
Participation in projects, networks and consortia Yes
Funding
Funding status Public
Details APHP/Programme hospitalier de recherche clinique.
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 Yes
Details Performed at individual level
Additional information regarding sample selection. Prospective. Inclusion cut-off date not determined.
Database objective
Main objective To define early diagnostic criteria for Behcet's Disease for patients under 16 years old.
Inclusion criteria Recurrent oral aphthosis (ROA) associated with at least one of these symptoms: genital ulceration (GU), erythema nodosum, folliculitis, pustulous/acneiform lesions, positive pathergy test, uveitis, venous/arterial thrombosis, family history of Maladie de Behcet
Population type
Age Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Population covered Sick population
Gender Male
Woman
Geography area International
Detail of the geography area 32 centres: France, UK, Italy, Switzerland, Germany, Japan, Saudi Arabia, Iran, Turkey, Egypt and Morocco.
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 03/2008
Date of last collection (YYYY or MM/YYYY) 03/2012
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 110
Data
Database activity Current data collection
Type of data collected Clinical data
Declarative data
Clinical data (detail) Direct physical measures
Medical registration
Declarative data (detail) Face to face interview
Presence of a biobank Yes
Contents of biobank Blood cells isolated
DNA
Details of biobank content DNA bank, cell bank
Health parameters studied Health event/morbidity
Health event/mortality
Procedures
Data collection method Interviews: manual input from a paper questionnaire. Clinical examinations: handwritten. Biological analysis: handwritten.
Participant monitoring Yes
Details on monitoring of participants Indefinite duration
Links to administrative sources Yes
Linked administrative sources (detail) CLEAN WEB
Promotion and access
Promotion
Link to the document http://www.ncbi.nlm.nih.gov/pubmed/?term=PED-BD
Description List of publications in Pubmed
Access
Terms of data access (charter for data provision, format of data, availability delay) - Data may be used by academic teams; - To be decided if data may be used by industrial teams.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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