Survey of communication methods, interventions, and participation for people with ALS

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