Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease. There are currently no effective disease modifying therapies for ALS and death usually occurs within 3 years of symptom onset. Clinical intervention is primarily palliative, and there is an urgent imperative to develop systems that measure disease trajectory, determine the points of clinical intervention that maximise quality of life, and that help to identify of the most cost effective treatment approaches.
ALS-CarE will incorporate multidisciplinary management into framework models of palliative care that can be planned, implemented, evaluated and reassessed across different countries. This will be achieved using detailed clinical information, drawn from population based sources that can then be validated.
ALS-CarE will define key clinical milestones, representing stages of ALS, which will help to measure differences in resource utilisation, and will define methods by which quality of life and patient experiences are measured across disease stages. These data will be useful for pharmaco-economic analyses of new therapeutics - accurate analysis of these factors is also essential to the generation and monitoring of an evidence based care pathway. The completed project will provide a best practice framework for future management of neurodegenerative disease.