- French Registry on Biliary Atresia
Head :
Chardot Christophe
Last update : 08/17/2016 | Version : 1 | ID : 73217
| General | |
| Identification | |
| Detailed name | French Registry on Biliary Atresia |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL (approval no. 997085) |
| General Aspects | |
| Medical area |
Endocrinology and metabolism Pediatrics Radiology and medical imaging Rare diseases |
| Pathology (details) | Biliary atresia |
| Keywords | biliary atresia, therapy, registry, children, epidemiology |
| Scientific investigator(s) (Contact) | |
| Name of the director | Chardot |
| Surname | Christophe |
| Address |
149 rue de Sèvres 75743 Paris CEDEX 15 |
| Phone | + 33 1 44 49 41 52 |
| christophe.chardot@nck.aphp.fr observatoire.atresiebiliaire@nck.aphp.fr | |
| Organization | Necker Hospital for Sick Children |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Details | European Federation for Biliary Atresia Research |
| Funding | |
| Funding status |
Public |
| Details | PHRC AOM 02007 |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Observatoire français de l’atrésie des voies biliaires |
| Organisation status |
Private |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Additional information regarding sample selection. | Involvement of 45 centres participating in BA treatment (from diagnosis to liver transplantation). |
| Database objective | |
| Main objective | The aim of this registry is to promote research, therapeutic progress, information on family and medical training in the area of biliary atresia and related pathologies. |
| Inclusion criteria | Confirmed BA diagnosis confirmed. Children living in France born between 1986 and 2009. |
| Population type | |
| Age |
Newborns (birth to 28 days) Infant (28 days to 2 years) Early childhood (2 to 5 years) Childhood (6 to 13 years) Adolescence (13 to 18 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) | 1986 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1,107 (2009) |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Biological data |
| Clinical data (detail) |
Direct physical measures |
| Details of collected clinical data | Identity of children (first name, last name, date of birth, address), team or teams providing medical care; diagnostic circumstances; Kasai procedure and outcomes; possible liver transplantation and outcomes; outcome for the child. |
| Biological data (detail) | Biliary remnants |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity |
| Procedures | |
| Participant monitoring |
No |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://asso.orpha.net/OFAVB/__PP__5.html |
| 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 |
