A Programme for ALS Care in Europe (ALS-CarE)

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Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that strikes in the prime of life. There are currently no effective disease modifying therapies for ALS and death usually occurs within 3 years of symptom onset. Management is palliative and is aimed at maximising quality of life and minimising the burden of disease. The complexity and rapidly progressive nature of ALS requires a responsive multidisciplinary care system that that is built on reliable disease staging and evidence based symptom management.The purpose of ALS-CarE is to incorporate detailed clinical information drawn from population based sources into a responsive care programme. A standardised staging system will be validated, and quality of life and patient experiences will be measured and management optimised across disease stages from diagnosis to end of life. Health economic analysis will identify key differences in resource utilisation and will be useful for pharmaco-economic analyses of new therapeutics. The completed project will provide a user-friendly best practice framework for ALS that can be modified for management of other neurodegenerative diseases.