ALS Radcliff Study:
We are looking for Individuals with early symptom who have been diagnosed with Possible, Probable or Definite ALS
Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology. By participating in this study, you will contribute to a growing large ALS dataset and further improve current assessment & treatment of individuals diagnosed with ALS using physiological signals and objective measurements.
What is the purpose of the study?
This is a fully remote, observational, exploratory, non-controlled, non-drug study in people with Amyotrophic Lateral Sclerosis (ALS). The study seeks to explore whether specific digital measures gathered at home warrant further investigation as tools for monitoring clinical function and disease progression in ALS.
This study is completely remote - all assessments will be completed in your home. The necessary equipment for the study will be sent to your house, which includes:
spirometers for breathing tests
feet sensors for walking analysis
and an android smartphone
EverythingALS mobile App will make it easy for you to navigate the study.
The format consists of weekly ALS-FRS-R & proctors sessions with a research co-ordinator
Your total participation will be 9-12 months
Any gender, age 18 Years and older
Diagnosed with possible, probable, or definite ALS by a neurologist
Able to walk without help (without using a cane or walker. Ankle-foot orthotics (AFO) are allowed, as long as the study sole inserts can be accommodated within their shoes.
Are comfortable going up and down stairs without help safely. Use of hand railing is permitted and encouraged
Inability to read, understand, and speak English
Use of a ventilator, or non-invasive mechanical ventilation for more than 16 hours daily
The full list of requirements for the study can be discussed with the study coordinator