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What the Study Involves
Participating subjects will perform measurements on themselves and enter data every day for the first 3 months and then twice a week for the next 6 months (total of 9 months). If you are unable to perform the measurements, then a caregiver can perform the measurements.
You will measure your breathing function, hand strength, muscle quality, and activity level using equipment provided to you. We will also ask you to fill out intermittent surveys about your experience in the study and your abilities to do certain daily tasks.
If you are selected for inclusion in the study, the devices you need will be shipped to your home. You will receive:
1. Breathing – Air Smart Spirometer
Air Smart Respirometer is a simple tool to measure your ability to breathe. You will enter your measurements on the study website.
2. Strength – Digital Handgrip Meter
This will be used to test your handgrip strength with a squeeze and the digital display shows how much force you exerted. You will enter your measurements on the study website.
3. Eim (Electrical Impedance Myography) – Skulpt Chisel
EIM is a measurement that measures a number of aspects of muscle structure. The device will transmit information directly to your smartphone and your data will automatically be uploaded from the smartphone app to the study web site.
4. Activity – Fitness Tracker
This device will track your activity while you are wearing it on your wrist, and will also transmit information to your smartphone and your data will automatically be uploaded from the smartphone app to the study web site.
5. Speech Tracking
Your speech abilities will be measured by recording your voice as you read five sentences and repeat certain sounds and words. This will be done with an app that you install on your smartphone.
6. Surveys – ALSFRS-R & PREM
ALSFRS-R (revised ALS Functional Rating Scale ) asks 12 questions about your ability to function in certain daily activities.
PREM (ALS Self-Assessment Experience Questionnaire) asks a few questions about your experience involving in the study.
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