ALS AT HOME (ALS Testing through Home-Based Outcome Measures) is a research study aiming to improve how ALS is measured, with the goal of improving future research and making it possible for patients to participate in studies that are far away from where they live.
The goal of this study is to improve the way we measure outcomes in ALS trials, allowing for future research to be conducted more efficiently. All participants will take measurements at home and electronically send them to the research team.
What are involved:
Several devices are involved in the study for 9-month measurements, including Air smart spirometer, Skulpt chisel, and Mi band. These devices have their apps and can write specific data into participants Health App if allowed. This app will read these specific data from participants Heath app if allowed and also shows these data as a list.
Additionally, participants can review their data collection history by clicking the History button.
Data transfer:
Since the study requires participants daily data, participants need to open the app and click Send button before they go to bed every day to transfer the data to the study database. If participants forget to send data to the study database, a notification email will be sent to participants on the next day to remind them for data uploading
Privacy
Since ALS AT HOME is NOT a treatment study, participants data will NOT be used for any external resources and will ONLY be used for this study indicated in the informed consent. All data will be securely stored in a HIPAA compliant and PHI encrypted database
Healthkit API data is used for the following:
Forced expiratory volume (1sec), forced vital capacity- used to determine participants ability to breathe.
Active energy - used to determine participants calories burned
Steps, walking + running distance - used to determine participants activity by the number of steps taken and the distance performed
Body fat percentage, body mass index - used to measure participants fitness levels as well as fitness changes
Height, weight - used to measure fairness when comparing participants fitness levels and fitness changes with other participants