Study Purpose:
This study involves a one-time survey being conducted to learn more about the communication methods used by people with ALS, how they learn about their options for communication, and how they participate in various communication situations.
Study Status:
Not recruiting
Disease:
Amyotrophic Lateral Sclerosis (ALS) , Familial ALS , Sporadic ALS
Study Type:
Observational
Type of Intervention:
N/A
Intervention Name:
N/A
Placebo:
N/A
Phase:
N/A
Study Chair(s)/Principal Investigator(s):
Betts Peters, MA, CCC-SLP (Oregon Health & Science University) Melanie Fried-Oken, PhD, CCC-SLP (Oregon Health & Science University)
Clinicaltrials.gov ID:
Neals Affiliated?
No
Coordinating Center Contact Information
Oregon Health & Science University
Betts Peters / email hidden; JavaScript is required / 503-494-2732
3181 SW Sam Jackson Park Road
Portland, Oregon, 97202 United States
Full Study Summary:
The purpose of this study is to learn more about the communication methods used by people with ALS, how they learn about their options for communication, and how they participate in various communication situations. The information gathered for this study will be used to help improve the communication options and communication support services available to people with ALS. We want to hear from all people with ALS, regardless of whether they have experienced speech changes, or what methods they use for communication. To learn more about the study, please view our introductory video at https://youtu.be/Ku4mKxtwezc.
This one-time survey will take approximately 30-60 minutes, and can be completed online using a computer or smartphone. A paper version is also available. Responses will be kept anonymous. To take the survey or learn more about the study, please contact Betts Peters at alscomm@ohsu.edu or 503-494-2732.
Study Sponsor:
Participant Duration:
This study involves a one-time survey (available online or by mail) that will take approximately 30-60 minutes.
Estimated Enrollment:
1,000
Estimated Study Start Date:
04 / 26 / 2021
Posting Last Modified Date:
04 / 30 / 2021
Date Study Added to neals.org:
04 / 30 / 2021
Minimum Age:
21
Maximum Age:
89
Can participants use Riluzole?
Yes
All individuals with ALS aged 21-89 are eligible to participate.
Oregon Health & Science University
Betts Peters / 503-494-2732 / email hidden; JavaScript is required
Portland, Oregon
97202
United States