Transforming the Objective Real-world measUrement of Symptoms (TORUS)

治疗帕金森病的圣杯已经被推迟了几十年，因为很难衡量拟议的新药是否真的改善了患者的症状和日常生活。TORUS研究项目旨在通过一个新的传感技术平台来解决这个问题，该平台可用于患者自己的家中，沿着先进的数据融合和机器学习管道，可以测量数周和数月内与特定移动相关的行为的变化。神经系统疾病是导致残疾的最大原因-仅在英国就有15万人患有帕金森病，发展最快的神经系统疾病帕金森病是无法治愈的，症状会随着时间的推移而恶化，严重降低生活质量，给患者家庭带来沉重的负担。NHS每年的成本为3.75亿英镑，家庭和社会服务贡献了8.77亿英镑（健康与社会护理研究中心，2017年）。到2040年，英国帕金森病患者的数量预计将增加近一倍。为了将新药推向市场，制药公司需要通过临床试验证明该药物是否能改善症状，如行走时的冻结，震颤以及承担日常任务的能力，如从坐着站起来或在房间之间移动。目前，为了收集这些证据，试验中的每一位患者都必须前往医院接受临床医生的标准化测试。然而，这些（最多）每月的症状“快照”样本不能很好地代表患者真实症状的逐小时变化。因此，TORUS的愿景是在新药临床试验期间，在患者自己的家中，每天多次自主，连续和客观地测量疾病症状（与日常生活活动相关的活动）的能力，并且TORUS将通过使用与AI功能相机协同集成的腕戴式可穿戴设备来实现这一目标。来自可穿戴设备和相机的数据被融合，以提供与移动相关的活动质量的指标。该方案的结论与临床概念的证明。

The holy grail of a cure for Parkinson's disease has been held back for decades by the extreme difficulty of measuring whether proposed new drugs actually improve the patient's symptoms and daily life. The TORUS research programme aims to solve that problem through a novel platform of sensing technologies for use in patients' own homes along with an advanced data fusion and machine learning pipeline that measures changes in specific mobility-related behaviours over weeks and months.Neurological disorders are the single largest cause of disability - in the UK alone there are 150,000 people with Parkinson's disease, the fastest-growing neurological condition. Parkinson's disease is incurable, and symptoms worsen over time, severely reducing quality of life and creating heavy burdens on the patient's family. The cost to the NHS each year is £375M, with families and social services contributing a further £877M (Centre for Health & Social Care Research, 2017). The number of people with Parkinson's disease in the UK is expected to nearly double by 2040.To get a new drug to market, pharmaceutical (pharma) companies need to evidence by a clinical trial whether the drug improves symptoms such as freezing when walking, tremor and the ability to undertake daily tasks such as standing up from sitting or moving between rooms. Currently, to gather this evidence, each patient in the trial must travel to hospital to be observed performing standardised tests by a clinician. However, these (at most) monthly "snapshot" samples of symptoms are a poor representation of the hour-by-hour variation of the patient's true symptoms. The vision of TORUS is therefore to create the capability to autonomously, continuously and objectively measure symptoms of illness (mobility-related activities of daily living) many times every day during the clinical trial of a new drug, in the patient's own home and for months at a timeTORUS will achieve this goal by using a wrist-worn wearable integrated synergistically with AI-enabled cameras. The data from the wearable and cameras is fused to give metrics of the quality of mobility-related activities. The programme concluses with a clinical proof of concept.