A mindful community for ALS patients and their caregivers
A Mindful Community for People With ALS and Their Primary Caregivers
This study is testing an online mindfulness program for people with ALS and their caregivers to see if it can help them feel better and improve their quality of life.
Quick facts
| Phase | Not applicable |
|---|---|
| Study type | Interventional |
| Enrollment | 300 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Harvard University Academic / other |
| Locations | 1 site (Cambridge, Massachusetts) |
| Trial ID | NCT05595850 on ClinicalTrials.gov |
What this trial studies
This project aims to create an online community focused on mindfulness for individuals with Amyotrophic Lateral Sclerosis (ALS) and their primary caregivers. It seeks to enhance quality of life by utilizing technology to deliver a three-week mindfulness program through an optimized e-learning platform. The intervention will assess the effectiveness of this community in reducing psychological distress and improving overall well-being for both patients and caregivers. By fostering continuous engagement, the study hopes to maintain the benefits of mindfulness over time.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with ALS who can use a smartphone, tablet, or computer and have access to the Internet.
Not a fit: Patients who do not have access to personal devices or the Internet may not benefit from this study.
Why it matters
Potential benefit: If successful, this initiative could significantly improve the quality of life for ALS patients and their caregivers by reducing psychological distress.
How similar studies have performed: Previous studies have shown positive results with mindfulness-based interventions, but this approach of creating a mindful community is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: For the ALS patients * a definite, probable, laboratory-supported, or possible ALS by revised El-Escorial criteria * they must have the physical ability, with or without adaptive devices, to use a smartphone, a tablet, or a computer * have access to the Internet. For the caregivers * be the person who resides with the ALS patient and is the major provider of unpaid care and assistance (typically, the spouse or another close relative) * s/he must be able to use the application * have access to the Internet. Exclusion criteria - Using shared devices. Patients and caregivers should have their own devices.
Where this trial is running
Cambridge, Massachusetts
- Harvard University — Cambridge, Massachusetts, United States (Recruiting)
Study contacts
- Principal investigator: Ellen Langer, PhD — Harvard U
- Study coordinator: Deborah R Phillips, PhD
- Email: dphillips@fas.harvard.edu
- Phone: 9739027938
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.