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Do Video Recordings of Multidisciplinary Clinics Improve Quality of Life for People With ALS and Their Caregivers?

Comparing the Impact of Video Integration to Traditional Amyotrophic Lateral Sclerosis Visit Communication on Patient and Caregiver Quality of Life

Who can join

Ages 18 and older · All sexes

Inclusion Criteria for People with ALS:

* Diagnosis of ALS by either El- Escorial or Gold Coast Criteria
* ≥18 years of age
* Plan to attend MDC visits for 12 months
* Speak English or Spanish
* Presence of a caregiver (defined as someone who assists with care) who is also participating in the VITALS trial
* Projected life expectancy of at least 12 months as determined by the site investigator.

Exclusion Criteria for People with ALS:

* Unable or unwilling to provide informed consent or follow study procedures
* Significant cognitive impairment, clinical dementia, or unstable psychiatric illness (including, but not limited to, psychosis, active suicidal ideation, suicide attempt, or untreated major depression) as determined by the site investigator
* Current pregnancy based on participant self-report;
* Unable to access the internet;
* Do not have access to a personal or shared email and are not interested in creating a personal or shared email;
* Do not wish to create a patient portal account, if they do not already have one;
* Uncorrected hearing or visual impairment that would impair the ability to view video recordings;
* Incarcerated.

Inclusion Criteria for Caregivers:

* Agree to their identified role as a caregiver of a patient with ALS participating in the VITALS trial;
* Speak English or Spanish;
* ≥18 years of age.

Exclusion Criteria for Caregivers:

* Unable or unwilling to provide consent or follow study procedures;
* Unable to access the internet;
* Do not have access to a personal or shared email and are not interested in creating a personal or shared email;
* Uncorrected hearing or visual impairment;
* Professional caregiver for the patient;
* Incarcerated.

About the study

Amyotrophic lateral sclerosis (ALS) is a fatal, rare neurodegenerative disease affecting 30,000 people in the United States. The gold standard of care for people with ALS is multidisciplinary clinics (MDC). In these multidisciplinary clinics, which occur every 3 to 4 months, people with ALS see up to 12 different healthcare providers (e.g., speech therapy, physical therapy, the ALS doctor). These clinics can last from three to five hours, and across these three to five hours people with ALS and their caregivers receive a lot of information that is critical to the care and quality of life for people with ALS. However, this information can be difficult to remember given the large amount of information that is conveyed. The current standard for providing take-home information about the visit is to provide patients with a written after-visit summary and access to their doctor's notes about the visit, typically through the patient portal. This study tests whether providing participants with video recordings of their MDC visits improves their quality of life and the quality of life of their caregivers. The study will enroll 400 pairs of people with ALS and their caregivers from eight different sites in the United States. Half of the participants in the study will receive their after-visit summary notes (the NOTES condition) and the other half of the participants will receive both their summary notes, but will also receive video recordings of their MDC visits that they can watch on their own at home (the VIDEO condition). The study will last for 12 months, with participants receiving NOTES or VIDEO at each of their regularly-scheduled MDCs during the 12 months. The study will test whether caregiver and patient participants in the VIDEO condition experience better quality of life than those in the NOTES condition at 1 month, 6 months, and 12 months from study enrollment. The results of this study will help determine what is the most effective approach to communicating MDC information to people with ALS and their caregivers.

What is being tested

• Video recording (behavioral)
• Notes Instruction (behavioral)

Sponsor: Trustees of Dartmouth College · Participants: 800 · Started: Aug 12, 2026

Contact the study team

• Paul J Barr, PhD · Phone: 603-646-7016
• Kelly M Goedert, PhD · Phone: 603-646-6976

Official record on ClinicalTrials.gov — NCT07454733

Locations in the U.S.

Conditions

• Amyotrophic Lateral Sclerosis

From ClinicalTrials.gov, data retrieved Nov 15, 2026. Each study sets its own eligibility; the study team decides who can join.