Last update : 08/17/2016 | Version : 1 | ID : 73218
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 |
isabelle.kone-paut@bct.aphp.fr | |
Organization | Kremlin-Bicêtre University Hospital (AP-HP) |
Name of the director | Piram |
Surname | Maryam |
maryam.piram@bct.aphp.fr | |
Organization | Bicêtre University Hospital |
Name of the director | Darce Bello |
Surname | Martha |
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 |
Partners - FAQ - Contact - Site map - Legal notices - Administration - Updated on December 15 2020 - Version 4.10.05