NCT07454733
Do Video Recordings of Multidisciplinary Clinics Improve Quality of Life for People With ALS and Their Caregivers?
Not Yet Recruiting · Not Applicable · Trustees of Dartmouth College · registry updated 2026-03-06
Inclusion and exclusion lines below are quoted from ClinicalTrials.gov. No match score is shown, because a score needs a person's age, biomarkers, and treatment dates. Confirm the record with the study team.
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....
Inclusion
- 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
Exclusion
- 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;