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 |
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