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.

Disease:

Amyotrophic Lateral Sclerosis (ALS),  Familial ALS,  Sporadic ALS

Study Type:

Observational Study

Study Category:

Survey

Study Status:

Enrolling

Phase:

Not Applicable

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 (11 digit #):

Neals Affiliated?

No

Coordinating Center Contact Information

Oregon Health & Science University
Betts Peters / .(JavaScript must be enabled to view this email address) / 503-494-2732
.(JavaScript must be enabled to view this email address) 3181 SW Sam Jackson Park Road
Mail Code: CDRC
Portland, Oregon 97202 USA

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

Estimated Study Completion Date:

Posting Last Modified Date:

04/30/2021

Date Study Added to alsconsortium.org:

04/30/2021
  • Eligibility Criteria

    Gender:

    Female, Male

    Minimum Age:

    21

    Maximum Age:

    89

    Time since Symptom Onset:

    N/A

    Time since Diagnosis:

    N/A

    Can participants use Riluzole?

    Yes


    All individuals with ALS aged 21-89 are eligible to participate.

  • Site Contact Information

    Oregon Health & Science University
    Betts Peters / .(JavaScript must be enabled to view this email address) / 503-494-2732
    Portland, Oregon 97202
    USA