KAWA-NET - Registry on Kawasaki Disease

Head :
Kone-Paut Isabelle
Piram Maryam
Darce Bello Martha

Last update : 08/17/2016 | Version : 1 | ID : 73218

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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 Registry on Kawasaki Disease
Sign or acronym KAWA-NET
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL
General Aspects
Medical area Cardiology
Pediatrics
Rare diseases
Rheumatology
Pathology (details) Kawasaki disease
Keywords kawanet, heart complications, Kawasaki, treatment
Scientific investigator(s) (Contact)
Name of the director Kone-Paut
Surname Isabelle
Phone +33 (0)1 45 21 32 47
Email isabelle.kone-paut@bct.aphp.fr
Organization Kremlin-Bicêtre University Hospital (AP-HP)
Name of the director Piram
Surname Maryam
Email maryam.piram@bct.aphp.fr
Organization Bicêtre University Hospital
Name of the director Darce Bello
Surname Martha
Email martha.darce@bct.aphp.fr
Organization Kremlin-Bicêtre University Hospital (AP-HP)
Collaborations
Funding
Funding status Public
Details PHRC 2009
Governance of the database
Sponsor(s) or organisation(s) responsible Paris Public Hospitals (AP-HP)
Organisation status Public
Additional contact
Main features
Type of database
Type of database Morbidity registers
Database objective
Main objective Kawanet is a clinical and biological data repository aimed to define the epidemiological characteristics of Kawasaki disease in the French population; to research risk factors for cardiac complications or resistance to standard treatment and to participate in genomic studies in an international consortium.
Inclusion criteria Patients diagnosed with KD in a French hospital were prospectively and retrospectively included between 01/2011 and 03/2014. Data was stored on a secure electronic database (Cleanweb). A DNA-trio collection was carried out among consenting families.
Population type
Age Newborns (birth to 28 days)
Infant (28 days to 2 years)
Early childhood (2 to 5 years)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area France
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2011
Date of last collection (YYYY or MM/YYYY) 2014
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 401
Data
Database activity Data collection completed
Type of data collected Clinical data
Clinical data (detail) Direct physical measures
Details of collected clinical data Sex; age; origin; symptoms; heart complications; treatment
Presence of a biobank Yes
Contents of biobank DNA
Details of biobank content A DNA-trio collection was carried out among consenting families.
Health parameters studied Health event/morbidity
Health care consumption and services
Care consumption (detail) Medicines consumption
Procedures
Participant monitoring No
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://mediatheque.larhumatologie.fr/mediatheque/media.aspx?mediaId=6721&channel=5730
Access
Terms of data access (charter for data provision, format of data, availability delay) Contact the scientist in charge.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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