ALS Focus Wave 2 - What Matters Most Survey

This Dataverse record contains the following files: ALSFocusWave2_DataDictionary.xlsx – This is the data dictionary for all surveys fielded in ALS Focus Wave 2. 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). ALSFocusWave2_Demographics.csv – This data file contains demographic and disease history responses to the About Me survey which opened in Wave 1. ALSFocusWave2_WMM.csv – This data file contains total scores generated from responses to the ALS Health Index Short Form (ALS-HI-SF) in the What Matters Most survey. After Wave 2 closed, the total ALS-HI-SF scores were calculated by staff at the University of Rochester where the ALS-HI-SF was developed by Dr. Chad Heatwole, MD, MS-CI. The Wave 2 data dictionary contains more information on the ALS-HI-SF and the total scores. ALSFocusWave2_ALSFRSandVC.csv – This data file contains responses to questions on ALSFRS-R and Vital Capacity scores, which opened in Wave 1. Starting in Wave 2, participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day. ALSFocusWave2_HealthStatus.csv – This data file contains responses to the Health Status survey, which opened in Wave 2. Participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.