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