M. de Carvalho, M.Kuzma-Kozakiewicz, M.Piotrkiewicz, J. Grosskreutz, P.Andersen, S.Petri
Multiple
Portugal|Poland|Germany|Sweden
ONWebDUALS: ONTology-based Web Database for Understanding Amyotrophic Lateral Sclerosis
JPND-Preventive Strategy Pilot
1,250,386
01/01/2015
3.0
Motor neurone diseases
Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurodegenerative disease which is characterized by limb weakness, speaking and swallowing impairment and respiratory insufficiency, generally leading to death after 2-3 years of disease progression. Although advances in understanding ALS have been achieved in recent years, there is incomplete information on the potential association between risk factors, genetic mutations, clinical features and survival. For example the role of risk factors is likely to be different for different mutations. To investigate this important interplay we aim to build a standardized database, which should be implemented in the form of a computer system, in order to permit the use of advanced methods of analysis able to recognize relevant associations. This European ALS web-database is intended to include a very large population of patients, derived from the consortium participants and from other European centers by external collaboration, and through interaction with patients organizations. With the derived information, it will be possible to suggest specific preventive strategies, to customize precise research studies and to tailor therapeutic trials to particular populations to develop individualized treatment strategies. The expected major implication is a decrease in the social impact of this disorder in Europe