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FRAlim : Registry on Amyotrophic Lateral Sclerosis (ALS) in Limousin
http://www.unilim.fr/ient/
[email protected]
France
B Marin, UMR Inserm 1094, Population-based epidemiology of amyotrophic lateral sclerosis (ALS) in an ageing Europe–the French register of ALS in Limousin (FRALim register).|B Marin, UMR Inserm 1094, Stratification of ALS patients’ survival: a population-based study.|B Marin, UMR Inserm 1094, Population-Based Evidence that Survival in Amyotrophic Lateral Sclerosis is Related to Weight Loss at Diagnosis.
Demographic characteristics, neurological evaluations, nutritional evaluations
Motor neurone diseases
No
No policy exists
Access through collaboration with PI only| Local/ regional access|National access|International access|Access for pilot studies permitted|Access restricted to peer-reviewed work|Resource has own ethics approval so usually no need for separate external ethics approval
Yes
Data held on computer based records
Data is web-based
Data is held as individual records
No
No
No
Database is web-based
Database is web-based
Data summarised in database
No
Data collection ongoing|Data analysis ongoing|Closed to new patients
01/01/2001
No
Survival
Yes
0-500 clinical cases
4
To improve the epidemiological and clinical description of ALS in France using a reliable tool (exhaustive case ascertainment)
FRAlim : Registry on Amyotrophic Lateral Sclerosis (ALS) in Limousin
Disease Registers
France
Motor neurone diseases
2016