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

运动神经元疾病：以患者为中心的进行性神经系统疾病护理 - 证据驱动政策。

• 批准号: nhmrc : GNT1153439
• 负责人: A/Pr Paul Talman
• 金额: $ 77.1万
• 依托单位国家: 澳大利亚
• 项目类别: Partnerships
• 财政年份: 2018
• 资助国家: 澳大利亚
• 起止时间: 2018-01-01 至 无数据
• 项目状态: 已结题
• 来源: https://researchdata.edu.au/motor-neurone-disease-driving-policy/1349029
• 关键词: Motor; Neurone; Disease; Patient; centred

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.

运动神经元疾病（MND）是成人发病的神经退行性疾病，其中进行性运动无力导致死亡，通常在2-3年内死于呼吸衰竭。该项目的目的是创建一个国家数据采集应用程序，从患者那里收集健康信息，这些信息可供患者及其医疗保健提供者用于管理自己的健康需求，此外还可以进行整理，为研究提供信息，进而指导国家政策。