Summary:
The goal of this study is to develop and validate better scales for tracking ALS progression with the hopes that these tools can lead to faster, more efficient, and more decisive ALS clinical trials in the future. We are recruiting adults with a diagnosis of ALS (or ALS variants including PLS and PMA) anywhere in the United States to participate in this fully remote study. No in-person visits are required. This study is not expected to benefit participants directly, but we hope this research will allow us to conduct more effective ALS research studies in the future.
Study participants will be asked to participate in the study for a minimum of 6 months, with monthly completion of study activities on REDCap. Participants will complete questionnaires on the computer about their ALS (the ROADS and the ALSFRS-R) every month for a minimum of 6 months. Participants will also complete questionnaires 1 time by phone. Participants will also have a minimum of 2 neurologic exams by video teleconference to validate a new telemedicine neurologic exam scale.