Determining the Feasibility, Acceptability, and Potential Effectiveness of Sharing Video Recordings of Multidisciplinary ALS Clinics With Patients and Their Caregivers

Study Purpose:

Our objective in the proposed project is to: (a) operationalize and determine the feasibility and acceptability of a trial where clinic multi-disciplinary clinic (MDC) visits are audio/video recorded and shared with patients with ALS and their caregivers; (b) gather preliminary data examining the impact of routinely adding audio/video recordings of clinic visits to UC on self-management ability and other behavioral, health and health services outcomes at baseline (T0) and other regular interviews from enrollment (T1= 1 Week, T2= 3 Months); and (c) identify factors pertinent to the acceptability of our study protocol and the audio/video recording of visits.

Study Status:

Not recruiting


Amyotrophic Lateral Sclerosis

Study Type:


Type of Intervention:


Intervention Name:





Study Chair(s)/Principal Investigator(s):

Jeffrey Cohen, MD, Dartmouth-Hitchcock Medical Center, Paul J Barr, PhD, Dartmouth College ID:


Neals Affiliated?


Coordinating Center Contact Information

Full Study Summary:

We will conduct a single-site, two-arm, parallel group, patient-randomized, controlled, pilot trial with 3-month follow up, to determine the feasibility, acceptability, and potential effectiveness of sharing audio/video recordings of multidisciplinary ALS clinics with patients and their caregivers. We will recruit 24 patients with ALS and their caregivers over a recruitment period of 1 year. We are primarily interested in determining the feasibility of the trial and acceptability of the audio/video intervention. We will also explore the impact on the patients' ability to self-manage their care as well as exploratory outcomes, at baseline (T0 = pre-visit), at T1 (1 week), and at T2 (3 months).

Study Sponsor:

Dartmouth-Hitchcock Medical Center

Estimated Enrollment:


Estimated Study Start Date:

05 / 12 / 2021

Estimated Study Completion Date:

06 / 09 / 2022

Posting Last Modified Date:

02 / 21 / 2023

Date Study Added to

01 / 22 / 2021

Minimum Age:

18 Years

Maximum Age:


Inclusion Criteria:

- diagnosed and primarily treated for Amyotrophic Lateral Sclerosis (ALS)

- Aged 18 years or greater

- Can communicate in English (verbally, on a computer, or with assistance)

- Have email

- Have internet access

- Willing to have their multidisciplinary clinic visit audio/video recorded for a 3 month period

Exclusion Criteria:

- Those without the capacity to provide consent, either themselves or via proxy

Dartmouth-Hitchcock Medical Center

Lebanon, New Hampshire 03766
United States