ALS Focus Wave 3 – Caregiver Needs Survey

The NeuroVERSE record contains the following files: ALSFocusWave3_DataDictionary.xlsx – This is the data dictionary for surveys fielded in ALS Focus Wave 3. This file has been updated to include a new layout, revised variable names to improve consistency, and greater detail on survey questions and programming logic (e.g., skip patterns). ALSFocusWave3_CaregiverNeeds.csv – This file contains responses to the Caregiver Needs survey for current and past caregivers. This survey was available in Wave 3. ALSFocusWave3_Demographics.csv – This file contains responses to the About Me demographics survey since ALS Focus launched in February 2020. This survey is designed for current caregivers, past caregivers, and participants with ALS. ALSFocusWave 3_ALSFRSandVC.csv – This data file contains responses to questions on ALSFRS-R and Vital Capacity scores, which opened in Wave 1 for participants with ALS. Starting in Wave 2, participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day. ALSFocusWave3_HealthStatus.csv – This data file contains responses to the Health Status survey, which opened for participants with ALS in Wave 2. Participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.