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

肌萎缩性侧索硬化症（ALS）是一种进行性神经退行性疾病，发生在壮年。目前还没有有效的治疗ALS的方法，死亡通常发生在症状出现的3年内。管理是姑息性的，旨在最大限度地提高生活质量和减少疾病负担。ALS的复杂性和快速进展的性质需要一个反应迅速的多学科护理系统，该系统建立在可靠的疾病分期和基于证据的症状管理基础上。ALS-CarE的目的是将从人口来源中获得的详细临床信息纳入响应性护理计划。标准化的分期系统将得到验证，生活质量和患者体验将得到衡量，从诊断到生命终结的各个疾病阶段的管理将得到优化。卫生经济分析将确定资源利用方面的关键差异，并将有助于对新疗法进行药物经济分析。完成的项目将为ALS提供一个用户友好的最佳实践框架，可以修改为管理其他神经退行性疾病。

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.