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Healing ALS Registry Observational Study (HAROS)
Sponsor: Healing Advocates Registry and Ministry
Summary
This is a prospective, observational, online study of people diagnosed with ALS, MND or PLS referred to as HAROS (Healing ALS Registry Observational Study). Participants will enter information into an online ALS registry once per month, including their ALSFRS-R data, certain other symptoms, dietary intake, supplements, medications and other therapies, both conventional and integrative. Participants will also enter the hours spent on optional self-study and free online education. The investigators will assess the effectiveness of various therapies and education by measuring physical outcomes.
Key Details
Gender
All
Age Range
18 Years - 110 Years
Study Type
OBSERVATIONAL
Enrollment
1000
Start Date
2026-01-26
Completion Date
2036-03-31
Last Updated
2026-01-28
Healthy Volunteers
No
Conditions
Interventions
Education about treatment options
Education about treatment options and integrative therapies is optional. It is available online and is free for all study participants.
Dietary Supplements: Vitamins, Minerals, Herbs, etc.
The investigators are observing type and quantity of dietary supplements, vitamins, minerals and herbs that ALS/MND/PLS patients take regularly.
Meditation, Prayer, Talk Therapy, Affirmations, Journaling, etc.
Many of those diagnosed with ALS/MND/PLS regularly engage in meditation, prayer and other behavioral protocols. These will be observed and analyzed to see if, and to what degree they affect outcomes.
Diet, various diets will be observed
May ALS/MND/PLS patients follow a specific diet such as ketogenic, vegetarian, gluten-free, dairy-free, and/or sugar-free. The investigators will analyze which diets are most efficacious.
Exercise, physical therapy, occupational therapy, speech therapy, sauna, EMS, massage and other therapies
Exercise, physical therapy, occupational therapy, speech therapy, sauna, massage, EMS (electro-muscular stimulation), red light therapy and other physical modalities will be observed and analyzed for effect on outcomes.
ALS medications and other medications
Many ALS/MND/PLS patients find benefit from prescription and other drugs. These will be observed and analyzed for effect on quality of life and outcomes.
Physical and emotional support
Study participants are asked to record the level of emotional and physical support they get from family members, caregivers, friends, medical professionals and members of their community. The investigators will analyze how the perceived level of emotional and physical support affect outcomes.
Locations (1)
Virtual
Park City, Utah, United States