C.A.R.O.L.E: Active network coordination of longitudinal epilepsy observatory - Longitudinal Study of Patients with Epilepsy: Medical and Social Outcome Study 
Head :
Jallon Pierre, Unité d'épileptologie et d'EEG
Last update : 09/05/2017 | Version : 2 | ID : 9316
| General | |
| Identification | |
| Detailed name | Longitudinal Study of Patients with Epilepsy: Medical and Social Outcome Study |
| Sign or acronym | C.A.R.O.L.E: Active network coordination of longitudinal epilepsy observatory |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL approval |
| General Aspects | |
| Medical area |
Neurology |
| Keywords | First seizure, drug-resistant, crisis |
| Scientific investigator(s) (Contact) | |
| Name of the director | Jallon |
| Surname | Pierre |
| Address | CEA |
| pierre.jallon@cea.fr | |
| Unit | Unité d'épileptologie et d'EEG |
| Collaborations | |
| Funding | |
| Funding status |
Private |
| Details | French foundation for epilepsy research |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Fondation française pour la recherche sur l'épilepsie |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Study databases |
| Study databases (details) |
Longitudinal study (except cohorts) |
| Database recruitment is carried out by an intermediary |
A selection of health care professionals A selection of health institutions and services |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Information was provided by 243 neurologists and paediatric neurologists. |
| Database objective | |
| Main objective | To assess the medical and social outcome of subjects with spontaneous epileptic seizures and to determine drug resistance predictors. |
| Inclusion criteria |
- men and women
- having experienced first epileptic seizure between 01/05/1995 and 30/06/1996 |
| Population type | |
| Age |
Early childhood (2 to 5 years) Childhood (6 to 13 years) Adolescence (13 to 18 years) Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 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) | 05/1995 |
| Date of last collection (YYYY or MM/YYYY) | 06/1996 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1,942 |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Declarative data Paraclinical data |
| Clinical data (detail) |
Direct physical measures |
| Declarative data (detail) |
Paper self-questionnaire |
| Details of collected declarative data | ICBERG questionnaire (description of epileptic seizures) |
| Paraclinical data (detail) | - electroencephalography (EEG) - computed tomography |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Participant monitoring |
Yes |
| Details on monitoring of participants | 10 years |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/?term=Carole+AND+Jallon[author] |
| Description | List of publications in Pubmed |
| 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 |
