Video Recordings of Multidisciplinary Clinics for People With ALS and Their Caregivers
This study is looking at whether video recordings of multidisciplinary clinic (MDC) visits can improve the quality of life for people with Amyotrophic Lateral Sclerosis (ALS) and their caregivers. People with ALS often receive a lot of information during these long clinic visits, which can be hard to remember. This study will provide participants with video recordings of their MDC visits, accessible through a secure online platform called HealthPAL. Participants will also receive instructions on how to view their after-visit summaries and doctor's notes in their patient portal. The study aims to enroll 800 participants and will measure changes in quality of life using surveys over 12 months. To join, you must be at least 18 years old, have an ALS diagnosis, plan to attend MDC visits for 12 months, speak English or Spanish, and have a caregiver who also participates.
- Study design
- This is an interventional study planning to enroll 800 participants. It will compare the impact of video recordings and notes instruction on quality of life.
- What's involved
- Participants will have their multidisciplinary clinic visits video recorded for 12 months and receive instructions on accessing patient portal notes. Quality of life surveys will be completed at enrollment, 1 month, 6 months, and 12 months.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed for 12 months after enrollment, with surveys administered at 1 month, 6 months, and 12 months.
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Do Video Recordings of Multidisciplinary Clinics Improve Quality of Life for People With ALS and Their Caregivers?
At a glance
Conditions
NCT07454733
Where you'd take part
This study runs at 7 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.
Dartmouth-Hitchcock Health
Lebanon, New Hampshirestudy coordinator listed
Massachusetts General Hospital
Boston, Massachusettsstudy coordinator listed
Mayo Clinic Jacksonville
Jacksonville, Floridastudy coordinator listed
Mayo Clinic Scottsdale
Scottsdale, Arizonastudy coordinator listed
Penn State Health Milton S. Hersey Medical Center
Hershey, Pennsylvaniastudy coordinator listed
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvaniastudy coordinator listed
University of Wisconsin Health
Madison, Wisconsinstudy coordinator listed
Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.
Study leadership
- Paul J Barr, PhD · PRINCIPAL_INVESTIGATOR · Dartmouth College
- Suma Babu, MD · PRINCIPAL_INVESTIGATOR · Massachusetts General Hospital
Who to contact
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Inclusion
Exclusion
What this trial measures
- For Caregiver Participants: the total score on the PROMIS-10 self report surveyAdministered at enrollment (baseline) and 1 month, 6 months, and 12 months after enrollment.
The Patient-Reported Outcomes Measurement Information System-10 (PROMIS-10) is a self-report measure of quality of life. The PROMIS-10 will be administered to caregivers via a secure online survey. We will analyze the total score on the PROMIS-10 as the primary outcome for caregiver participants.
- For Patient Participants: The total score on the ALSAQ-40 self report survey.Administered at enrollment (baseline) and 1 month, 6 months, and 12 months after enrollment.
The Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) is a self-report measure of quality of life for people with ALS. The ALSAQ-40 will be administered via a secure online survey.