About the ALS AT HOME study
What is ALS AT HOME?
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. We want to stress that this is NOT a treatment study.
In the ALS AT HOME study, we hope to recruit 220 people who have ALS and 30 people who do not have ALS from across the country. Participation in this study is completely voluntary; you decide if you want to participate. During this study, ALS participants will actively track the progression of the disease from their homes—clinic visits will never be required during this study.
If you are eligible and selected to participate, the study research team will send all the equipment
to your home. You will receive training and support from beginning to end. If you are selected to participate, the study will last a total of 9 months:
for the first three months, you will measure yourself every day
for the next six months, you will measure yourself twice a week
Throughout the study, you will also complete a few questionnaires weekly or monthly. If you are an ALS patient, we will ask for medical records to be sent to us.
Steps to participating in our study:
Why is ALS AT HOME important?
We hope that ALS AT HOME will change the way that clinical trials for ALS are performed. Our goals are to be able to reduce the number of patients that have to be enrolled in a trial and to reduce the length of the testing process. In addition, if we can show that ALS patients are able to reliably measure their disease at home, we can design future trials to include patients who do not live near a study center.