Do video recordings of multidisciplinary clinics help ALS patients and caregivers?

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This interventional study evaluates if adding video recordings of multidisciplinary ALS clinic visits to the standard written notes improves quality of life for people with ALS and their caregivers. Participants will receive either the standard notes via the patient portal or notes plus visit video recordings, and outcomes related to quality of life will be compared over time. Eligible adults with ALS and a participating caregiver will attend at least 12 months of MDC visits at participating centers. The study addresses how best to communicate complex, at-home care information that can be difficult to recall after lengthy, multi-provider visits.

Why it matters

Who can join: the full rules

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.

Where it's running

• Dartmouth-Hitchcock Health
  Lebanon, New Hampshire, United States Recruiting
• Mayo Clinic Scottsdale
  Scottsdale, Arizona, United States Not yet recruiting
• Mayo Clinic Jacksonville
  Jacksonville, Florida, United States Not yet recruiting
• Massachusetts General Hospital
  Boston, Massachusetts, United States Not yet recruiting
• Penn State Health Milton S. Hersey Medical Center
  Hershey, Pennsylvania, United States Not yet recruiting
• University of Pittsburgh Medical Center
  Pittsburgh, Pennsylvania, United States Not yet recruiting

Study contacts

• Principal investigator: Paul J Barr, PhD — Dartmouth College
• Study coordinator: Paul J Barr, PhD
• Email: paul.j.barr@dartmouth.edu
• Phone: 603-646-7016

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.