The purpose of this study is to determine if ALS disease progression can be tracked via smartphone application use.
Amyotrophic Lateral Sclerosis (ALS) , Familial ALS , Sporadic ALS , Primary Lateral Sclerosis (PLS) , Hereditary Spastic Paraplegia (HSP) , Healthy Volunteer , Healthy Volunteer with a Family History of ALS
Type of Intervention:
Study Chair(s)/Principal Investigator(s):
Jeffrey Rothstein, MD, PhD (PI) Steven Zeiler, MD, PhD (Co-I)
Coordinating Center Contact Information
Johns Hopkins University
855 N. Wolfe St, Rm 248
Baltimore, Maryland, 21205 United States
Full Study Summary:
This research is being done to see if the progression of disease in people with ALS and related motor neuron diseases can be tracked using a smartphone app. Due to the nature of the Amyotrophic Lateral Sclerosis (ALS) and related motor neuron diseases, it often becomes more difficult for patients to travel to sites to participate in research studies. We are looking for a less physically demanding way for patients to engage in trials and to improve and enhance the way we collect data for those studies. The use of smartphone applications (apps) in clinical practice and clinical trials has opened up new possibilities for tracking disease progression without frequent visits to a center. This app requires 3 different tasks to be performed once per week. You will use it for as long as you are able or until you no longer want to participate. Tasks include recording yourself describing a picture, reading a sentence, making an "ah" sound after taking a big breath and counting out loud as high as you can after taking a big breath. You will also be asked to complete the ALS Functional Rating Scale-Revised (ALSFRS-R) at periodic intervals.
Robert Packard Center for ALS Research
Patients will participate for as long as they are able. Enrollment/e-consent will be obtained online through REDCap. After completion in REDCap, participants will get a user ID to be entered into the app when download onto their device. It can be used on a smartphone or a tablet. No study visits are required. There are 3 tasks to be completed weekly.
Estimated Study Start Date:
02 / 11 / 2021
Estimated Study Completion Date:
02 / 01 / 2024
Posting Last Modified Date:
03 / 17 / 2021
Date Study Added to neals.org:
03 / 17 / 2021
This study is using REDCap, a secure website for medical research, to collect information and to enable you to consent/enroll in the study: https://mrprcbcw.hosts.jhmi.edu/redcap/surveys/?s=9TPWLWNCXK
Can participants use Riluzole?
must be able to speak without assistance of a device