NCT07454733Recruiting
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
Source: ClinicalTrials.gov · Last updated 8 Oct 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Interventional
- Enrollment
- 800 (estimated)
- First submitted
- 25 Feb 2026
- Start date
- 12 Aug 2026
- Primary completion date
- 1 Sept 2029
- Lead sponsor
- Trustees of Dartmouth College
- Diseases
- ALS (motor neurone disease)
- NCT number
- NCT07454733
What you commit to
- Study type: Interventional
- Planned participants: 800
- From 12 Aug 2026 to the primary completion date, 1 Sept 2029
- 7 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- 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
- Uncorrected hearing or visual impairment that would impair the ability to view video recordings;
- Uncorrected hearing or visual impairment;
Other
- Unable or unwilling to provide informed consent or follow study procedures
- 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;
- Incarcerated.
- 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;
- Professional caregiver for the patient;
- Incarcerated.
Who the study is looking for
- 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.
- 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.
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (7)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Massachusetts General Hospital Coordinator of this site? Confirm its status | Boston | United States | Not yet recruiting |
| Penn State Health Milton S. Hersey Medical Center Coordinator of this site? Confirm its status | Hershey | United States | Not yet recruiting |
| Mayo Clinic- Jacksonville Coordinator of this site? Confirm its status | Jacksonville | United States | Not yet recruiting |
| Dartmouth-Hitchcock Health Coordinator of this site? Confirm its status | Lebanon | United States | Recruiting |
| University of Wisconsin Health Coordinator of this site? Confirm its status | Madison | United States | Not yet recruiting |
| University of Pittsburgh Medical Center Coordinator of this site? Confirm its status | Pittsburgh | United States | Not yet recruiting |
| Mayo Clinic Scottsdale Coordinator of this site? Confirm its status | Scottsdale | United States | Not yet recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.