Healing ALS Registry Observational Study (HAROS)

Conditions

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

Eligibility Criteria

Sex

ALL

Age

18 Years - 110 Years

Healthy Volunteers

Not accepted

Interventions

• Education about treatment options — OTHER
  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. — DIETARY_SUPPLEMENT
  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. — BEHAVIORAL
  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 — OTHER
  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 — OTHER
  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 — DRUG
  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 — OTHER
  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.

Study Details

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 Dates

Start date

Jan 26, 2026

Status verified

Jan 2026

Primary completion

Feb 5, 2036

Completion

Mar 31, 2036

Study Design

Enrollment

1,000 participants (estimated)

Arms

• Arm: ALS/MND less than 3 years since diagnosis
  Those diagnosed with ALS, Amyotrophic Lateral Sclerosis or MND, Motor Neuron Disease (other countries) and time since diagnosis is less 3 years, or 36 months, as of the date they join the study.
• Arm: PLS less than 3 years since diagnosis
  Those diagnosed with PLS, Primary Lateral Sclerosis, and time since diagnosis is less 3 years, or 36 months, as of the date they join the study.
• Arm: ALS/MND 3 years or greater since diagnosis
  Those diagnosed with ALS, Amyotrophic Lateral Sclerosis or MND, Motor Neuron Disease (other countries) and time since diagnosis is 3 years or greater as of the date they join the study.
• Arm: PLS 3 years or greater since diagnosis.
  Those diagnosed with PLS, Primary Lateral Sclerosis and time since diagnosis is 3 years or greater as of the date they join the study.

Primary Outcome Measure

ALSFRS-R ALS Functional Rating Scale - Revised [ Time Frame: Participants will be assessed at baseline and each 1 year anniversary from the baseline until participant withdraws from the study for any reason, including death from any cause, up to a maximum of 10 years from baseline. ]

Central Contacts

• Healing ALS Study Administrator
  1-973-714-4621
  [email protected]

Locations (1)

Find similar trials in Park City, UT

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