ALS Focus Wave 4 – Telehealth Survey

The NeuroVERSE record contains the following files: ALSFocusWave4_DataDictionary.xlsx – This is the data dictionary for surveys fielded in ALS Focus Wave 4. ALSFocusWave4_Telehealth.csv – This file contains responses to the Telehealth survey for people with ALS and current caregivers. This survey was available in Wave 4. This file contains a new ‘dyad’ variable indicating which people with ALS and caregiver participants are linked. ALSFocusWave4_Demographics.csv – This file contains responses to the Demographics survey since ALS Focus launched in February 2020. This file contains a new ‘dyad’ variable indicating which people with ALS and caregiver participants are linked. ALSFocusWave4_ALSFRSandVC.csv – This data file contains responses to questions on ALSFRS-R and Vital Capacity scores since Wave 1. Starting in Wave 2, participants with ALS could answer these questions on a repeated basis, but not more than once per calendar day. ALSFocusWave4_HealthStatus.csv – This data file contains responses to the Health Status survey since Wave 2 when the Health Status survey opened. Participants with ALS could answer these questions on a repeated basis, but not more than once per calendar day.

NeuroVERSE 数据集（NeuroVERSE）包含以下文件：
ALSFocusWave4_DataDictionary.xlsx —— 该文件为ALS Focus第四轮调研的问卷字段数据字典。
ALSFocusWave4_Telehealth.csv —— 本文件收录肌萎缩侧索硬化症（Amyotrophic Lateral Sclerosis, ALS）患者与当前照料者的远程医疗调查问卷应答数据，该问卷随第四轮调研同步推出。文件新增了“配对组（dyad）”变量，用于标识存在关联关系的ALS患者与照料者参与者。
ALSFocusWave4_Demographics.csv —— 本文件收录自2020年2月ALS Focus项目启动以来的人口统计学调查问卷应答数据，同样新增了“配对组（dyad）”变量，用于关联ALS患者与照料者参与者。
ALSFocusWave4_ALSFRSandVC.csv —— 本数据集收录自第一轮调研以来的ALS功能评定量表修订版（ALS Functional Rating Scale-Revised, ALSFRS-R）与肺活量（Vital Capacity, VC）评分相关问卷应答数据。自第二轮调研起，ALS患者可重复填写该问卷，但每公历日仅可提交一次。
ALSFocusWave4_HealthStatus.csv —— 本数据集收录自健康状况调查问卷于第二轮调研上线以来的应答数据。ALS患者可重复填写该问卷，但每公历日仅可提交一次。