Researchers are looking for 220 people with ALS (amyotrophic lateral sclerosis) and 30 people who do not have ALS from around the country to participate in the ALS At HOME (ALS Testing through Home-Based Outcome Measures) study.
The aim of the study is to assess whether ALS patients can reliably measure disease progression from home, with the goal of changing the way that clinical trials for ALS are performed. The hope is to be able to reduce the number of patients that have to be enrolled in a trial in order to reduce the length of the testing process. In addition, if the study shows that ALS patients are able to reliably measure their disease at home, future trials could be designed to include patients who do not live near a study center.
During the study, participants with ALS will actively track the progression of their disease from their homes (there are no clinic visits associated with the study) and will fill out intermittent surveys about their experience in the study and their ability to perform daily tasks.
With or without the help of a caregiver, participating subjects will perform measurements on themselves and record data every day for the first three months, and then twice a week for the next six months. Measurements include breathing function, hand strength, muscle quality and activity level. Equipment, as well as training in how to use it, will be provided.
To be eligible to participate, individuals must be 18 to 85 years old, own a smart device (phone, tablet, etc.) with Bluetooth capability, have continuous Internet access at home and meet additional eligibility criteria.