Motor Neurone Disease: Patient centred care for a progressive neurological disease - evidence driving policy.

运动神经元疾病(MND)是一种成人起病的神经退行性疾病，进行性运动无力导致死亡，通常在2-3年内死于呼吸衰竭。该项目的目标是创建一个全国性的数据捕获应用程序，收集患者及其医疗保健提供者可以使用的健康信息，以管理他们自己的健康需求，并进一步进行整理，为研究提供信息，进而指导国家政策。

Motor neurone diseases (MNDs) are adult-onset neurodegenerative disorders where progressive motor weakness leads to death, usually from respiratory failure within 2-3 years. The aim of this project is to create a national data capture app that collects health information from patients that can be used by them and their healthcare providers to manage their own health needs and furthermore can be collated to inform research and in turn direct national policy.