Actigraphy and associated data on free-living assessments of movement in peopel with Amyotropic Lateral Sclerosis (ALS)

This dataset includes raw and processed actigraphy data collected from individuals diagnosed with Amyotropic Lateral Sclerosis (ALS), recruited through the Royal Brisbane and Women's Hospital between 2017 and 2021. Participants wore ActiGraph GT9X Link devices on their non-dominant wrist for 8 consecutive days at multiple timepoints over follow-up periods of up to 36 months. The dataset includes summary features derived using ActiLife and the open-source R package GGIR. These features include daily averages of Euclidean Norm Minus One (ENMO), time spent in moderate-to-vigorous physical activity (MVPA), step counts, and peak 6-minute activity measures. Activity count-derived metrics and epoch-level outputs are also provided. Matched phenotypic data includes ALS Functional Rating Scale-Revised (ALSFRS-R) scores and calculated motor subdomains, demographic details (age in years, sex), and durations since disease onset and diagnosis. These covariates are included in accompanying phenotype files to support replication and secondary analyses. The dataset was used to evaluate accelerometer-derived outcomes as candidate digital biomarkers for functional decline, disease monitoring, and powering of clinical trials in MND

本数据集包含2017年至2021年间通过皇家布里斯班妇女医院招募的肌萎缩侧索硬化症（Amyotropic Lateral Sclerosis, ALS）患者的原始与处理后的活动记录仪数据。受试者在长达36个月的随访周期内的多个时间点，连续8天将ActiGraph GT9X Link设备佩戴于非优势手腕。数据集包含使用ActiLife软件与开源R包GGIR提取的汇总特征，具体包括欧几里得范数减一（Euclidean Norm Minus One, ENMO）的日均值、中高强度体力活动（moderate-to-vigorous physical activity, MVPA）时长、步数，以及6分钟峰值活动指标；同时还提供了活动计数衍生指标与epoch级输出数据。匹配的表型数据涵盖肌萎缩侧索硬化功能评定量表修订版（ALS Functional Rating Scale-Revised, ALSFRS-R）评分与计算得到的运动子维度得分、人口统计学信息（年龄、性别），以及自发病与确诊以来的病程时长。上述协变量均收录于配套表型文件中，可用于重复分析与二次研究。本数据集曾被用于评估加速度计衍生指标作为运动神经元病（Motor Neuron Disease, MND）中功能衰退、疾病监测以及临床试验效能支撑的候选数字生物标志物的可行性。