KAWA-NET - Registry on Kawasaki Disease
Head :
Kone-Paut Isabelle
Piram Maryam
Darce Bello Martha
Piram Maryam
Darce Bello Martha
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 |
