ITMO public health
Last update : 08/17/2016 | Version : 1 | ID : 73035
| General | |
| Identification | |
| Detailed name | Registry on Amyotrophic Lateral Sclerosis (ALS) in Limousin |
| Sign or acronym | FRALim |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL: 911038 (June 2011); CCTIRS: 10487 bis (January 2011) |
| General Aspects | |
| Medical area |
Disability/handicap Neurology Rare diseases |
| Pathology (details) | Amyotrophic lateral sclerosis |
| Health determinants |
Genetic |
| Keywords | amyotrophic lateral sclerosis; ALS; Limousin; treatment; registry |
| Scientific investigator(s) (Contact) | |
| Name of the director | Marin |
| Surname | Benoit |
| Phone | +33 (0)5 55 43 58 20 |
| benoit.marin@unilim.fr | |
| Unit | UMR Inserm 1094 NET |
| Organization | Institute of Neurological Epidemiology and Tropical Neurology |
| Name of the director | Preux |
| Surname | Pierre Marie |
| preux@unilim.fr | |
| Unit | UMR Inserm 1094 NET |
| Organization | Institute of Neurological Epidemiology and Tropical Neurology |
| Name of the director | Couratier |
| Surname | Philippe |
| philippe.couratier@unilim.fr | |
| Unit | UMR Inserm 1094 NET |
| Organization | Institute of Neurological Epidemiology and Tropical Neurology |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Details | EURALS (European ALS Consortium) |
| Funding | |
| Funding status |
Public |
| Details | National Research Agency; ALS Research Association; Limousin - Poitou - Charentes Centre for Research and Higher Education |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | UMR Inserm 1094 NET, Limoges |
| Organisation status |
Public |
| Presence of scientific or steering committees |
Yes |
| Labelling and database evaluation | Steering Committee at Inserm UMR 1094 |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Database objective | |
| Main objective | To improve the epidemiological and clinical description of ALS in France. |
| Inclusion criteria | Patients with ALS identified by one of the following 3 sources: The French national body coordinating ALS referral centres; public and private hospitals in the Limousin region; health insurance data. |
| 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 |
| Gender |
Male Woman |
| Geography area |
Regional |
| French regions covered by the database |
Aquitaine Limousin Poitou-Charentes |
| Detail of the geography area | Limousin |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2000 |
| Size of the database | |
| Size of the database (number of individuals) |
< 500 individuals |
| Details of the number of individuals | 322 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Administrative data |
| Details of collected clinical data | Start site; familial ALS vs. sporadic ALS |
| Administrative data (detail) | Personal demographic data (name, age, sex, address), medical data (treatment start date, treating physician, Airlie House diagnostic classification). |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality Health care consumption and services |
| Care consumption (detail) |
Hospitalization Medical/paramedical consultation |
| Procedures | |
| Data collection method | Retrospective from medical administrative data. |
| Quality procedure(s) used | The collaborating centre for methodology is CEBIMER (Centre of epidemiology, biostatistics and research methodology), Limoges University Hospital, led by Prof. Preux; Dr. Marin, deputy head of the Capture-R System Management software. |
| Participant monitoring |
Yes |
| Links to administrative sources |
Yes |
| Promotion and access | |
| Promotion | |
| Link to the document | http://onlinelibrary.wiley.com/doi/10.1111/ene.12474/abstract;jsessionid=4DA9D9A2A656588F1CED30D101B2B8D9.f02t02 |
| Link to the document | http://tinyurl.com/PUBMED-FRAlim |
| Link to the document | http://tinyurl.com/HAL-FRAlim |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Available under certain conditions (contact 1 of 3 scientists in charge). |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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