ReLSEP - Lorraine Registry of Multiple Sclerosis (Qualified Register 2017-2022)
Head :
Guillemin Francis, CIC-EC NANCY
Debouverie Marc, CIC-EC NANCY
Debouverie Marc, CIC-EC NANCY
Last update : 10/25/2017 | Version : 2 | ID : 60061
| General | |
| Identification | |
| Detailed name | Lorraine Registry of Multiple Sclerosis (Qualified Register 2017-2022) |
| Sign or acronym | ReLSEP |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL : 909089 CCTIRS : 10.258 Clinical trials : NCT02883335 |
| General Aspects | |
| Medical area |
Immunology Neurology |
| Pathology (details) | Multiple sclerosis |
| Health determinants |
Geography |
| Keywords | Diagnosis, progression, therapeutic care |
| Scientific investigator(s) (Contact) | |
| Name of the director | Guillemin |
| Surname | Francis |
| Address |
CHRU de Nancy, Hôpitaux de Brabois, CIC 1433 Epidémiologie Clinique Faculté de médecine, bâtiment E, 2ème étage Rue du Morvan, 54500 Vandœuvre Les Nancy |
| Phone | 03-83-85-21-65 |
| francis.guillemin@chru-nancy.fr | |
| Unit | CIC-EC NANCY |
| Organization | CIC-EC |
| Name of the director | Debouverie |
| Surname | Marc |
| Address | 29 Avenue du Maréchal de Lattre de Tassigny, 54035 Nancy |
| Phone | + 33 (0)3 83 85 16 76 |
| m.debouverie@chru-nancy.fr | |
| Unit | CIC-EC NANCY |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Details | Involvement in a Cohort Network: EDMUS |
| Funding | |
| Funding status |
Public |
| Details | Health network |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | CIC-EC |
| Organisation status |
Public |
| Additional contact | |
| Name of the contact | Ziegler |
| Surname | Amandine |
| Address |
CHRU de Nancy, Hôpitaux de Brabois, CIC 1433 Epidémiologie Clinique Faculté de médecine, bâtiment E, 2ème étage Rue du Morvan, 54500 Vandœuvre Les Nancy |
| Phone | + 33 (0)3 83 85 28 52 |
| a.zieglr@chru-nancy.fr | |
| Unit | CIC-EC NANCY |
| Organization | CIC-EC |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Additional information regarding sample selection. | Prospective |
| Database objective | |
| Main objective | General objective: to study MS treatment modalities and determinants. To move towards a greater representation of patient population with multiple sclerosis as defined by geographical criteria. |
| Inclusion criteria | Patients with multiple sclerosis in the Lorraine region |
| Population type | |
| Age |
Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) Elderly (65 to 79 years) Great age (80 years and more) |
| Population covered |
Sick population |
| Pathology | VI - Diseases of the nervous system |
| Gender |
Male Woman |
| Geography area |
Regional |
| French regions covered by the database |
Alsace Champagne-Ardenne Lorraine |
| Detail of the geography area | Multicentric cohort (40 centres), 5 départements: 52, 54, 55, 57, 88 |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 01/2003 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 6331 |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Paraclinical data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Paraclinical data (detail) | Imaging |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Clinical exams: manual input |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Indefinite duration |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://tinyurl.com/PUBMED-ReLSEP |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/22354740 |
| Description | Estimating the prevalence and incidence of multiple sclerosis in the Lorraine region, France, by the capture-recapture method. |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/18637953 |
| Description | Natural history of multiple sclerosis in a population-based cohort. |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/17623734 |
| Description | Increasing incidence of multiple sclerosis among women in Lorraine, Eastern France. |
| Link to the document | https://www.ncbi.nlm.nih.gov/pubmed/27936086/ |
| Description | Geographical heterogeneity of muliple sclerosis prevelence in France |
| Link to the document | https://www.ncbi.nlm.nih.gov/pubmed/26148099 |
| Description | Excess Mortality in Patients with Multiple Sclerosis Starts at 20 Years from Clinical Onset: Data from a Large-Scale French Observational Study. |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Data may be used by academic teams Data may be used by industrial teams |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
