Do Video Recordings of Multidisciplinary Clinics Improve Quality of Life for People With ALS and Their Caregivers? (NCT07454733)
Comparing the Impact of Video Integration to Traditional Amyotrophic Lateral Sclerosis Visit Communication on Patient and Caregiver Quality of Life
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Mayo Clinic Scottsdale — Scottsdale, Arizona
Age range: 18 Years
🧪 Interventions in This Study
- Video recording (BEHAVIORAL)
- Notes Instruction (BEHAVIORAL)
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (7 Sites)
- Mayo Clinic Scottsdale — Scottsdale, Arizona
- Mayo Clinic Jacksonville — Jacksonville, Florida
- Massachusetts General Hospital — Boston, Massachusetts
- Dartmouth-Hitchcock Health — Lebanon, New Hampshire
- Penn State Health Milton S. Hersey Medical Center — Hershey, Pennsylvania
- University of Pittsburgh Medical Center — Pittsburgh, Pennsylvania
- University of Wisconsin Health — Madison, Wisconsin
📞 Contact the Study Coordinator
Phone: (603) 646-7016
Email: paul.j.barr@dartmouth.edu
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Amyotrophic Lateral Sclerosis (ALS)
- HEALEY ALS Platform Trial - Regimen I NUZ-001 — Boston, Massachusetts
- A Clinical Trial to Learn About the Effects of VHB937 in People With Amyotrophic Lateral Sclerosis (ALS) — La Jolla, California
- Efficacy and Safety of MSC-NTF (NurOwn) in Participants With Early Symptomatic ALS and Moderate Disease Presentation in ALS (ENDURANCE STUDY) — Phoenix, Arizona
- Resiliency Intervention for Patients With ALS and Their Care-Partners — Boston, Massachusetts
- Safety Study of XT-150 in Participants With ALS — Phoenix, Arizona
- A Phase Ⅰ/Ⅱa Study of SNUG01 in Adult Subjects With ALS — Boston, Massachusetts
Explore by condition: All Amyotrophic Lateral Sclerosis (ALS) clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.