Healing ALS Registry Observational Study (HAROS)

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.

Conditions

• Amyotrophic Lateral Sclerosis (ALS)
• Motor Neuron Disease (MND)
• Primary Lateral Sclerosis (PLS)

Interventions

OTHER

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_SUPPLEMENT

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.

BEHAVIORAL

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.

OTHER

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.

OTHER

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.

DRUG

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.

OTHER

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.

Sponsors & Collaborators

• Healing Advocates Registry and Ministry

  lead OTHER

Principal Investigators

• William L Cowden, MD · Chair of Scientific Board of Academy of Comprehensive Integrative Medicine, Co-chair of Medical Advisory Team of Healing ALS

Eligibility

Min Age

18 Years

Max Age

110 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2026-01-26

Primary Completion

2036-02-05

Completion

2036-03-31

Countries

• United States

Study Locations