Measuring self-reported fatigue in people with ALS and healthy volunteers
Study Purpose:
We are looking for healthy volunteers and individuals with motor neuron disease (ALS, PLS, HSP, SMA) to complete a survey study to help us learn more about fatigue in individuals with motor neuron disease. If you are interested in participating or learning more, please click this link: https://redcap.partners.org/redcap/surveys/?s=94JPCNPJJF
Disease:
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 ALSStudy Type:
Observational StudyStudy Category:
Study Status:
EnrollingPhase:
Not ApplicableStudy Chair(s)/Principal Investigator(s):
Dr. James Berry, Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH)
Clinicaltrials.gov ID (11 digit #):
Neals Affiliated?
NoCoordinating Center Contact Information
Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH)Zoe Scheier / .(JavaScript must be enabled to view this email address) / 617-643-4803
.(JavaScript must be enabled to view this email address) Boston, Massachusetts 02114 United States
Full Study Summary:
Fatigue is a prevalent, bothersome, and undertreated symptom in patients with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases. There is an urgent need to understand and measure fatigue in people with motor neuron diseases to determine whether therapies are able to treat this symptom and benefit patients. The purpose of this study is to measure patient reported fatigue in people with motor neuron diseases, to compare reported fatigue in people with motor neuron diseases with fatigue in healthy volunteers, and to track changes in fatigue over time.
Study Sponsor:
Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH)Participant Duration:
This study is up to 12 months long. We will ask you to complete a few questionnaires related to your experience of fatigue and related symptoms, at five time points (baseline, 4 weeks, 3 months, 6 months and 12 months). It will likely take you 30-45 minutes to complete the questionnaires at each time point.