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HAROS: Healing ALS Registry Observational Study

This is an observational study called HAROS for people diagnosed with Amyotrophic Lateral Sclerosis (ALS), Motor Neuron Disease (MND), or Primary Lateral Sclerosis (PLS). It aims to understand how different approaches, including education about treatment options, dietary supplements (vitamins, minerals, herbs), behavioral practices (meditation, prayer), specific diets (ketogenic, vegetarian), and various physical therapies (exercise, massage), affect these conditions. You can join if you are 18 to 110 years old and have a diagnosis of ALS, MND, or PLS, but you cannot be a smoker. The study will track your progress over time to see if these interventions lead to better outcomes, like improved functional ability. The study's status is currently unclear.

Study design
This is a prospective, observational study aiming to enroll at least 1000 participants. It is not randomized or blinded.
What's involved
You would enter information into an online registry once per month, including your symptoms, diet, supplements, medications, and other therapies. This will continue for up to 10 years.
Compensation
Not stated in the trial record.
Follow-up
Participants will be assessed at the start and then annually for up to 10 years, or until they leave the study.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT07233148

Healing ALS Registry Observational Study (HAROS)

Recruiting
Not specifiedAges 18+Observational
Healing Advocates Registry and Ministry
~1,000 participants
Updated 2026-06-24 on ClinicalTrials.gov
What's tested:Education about treatment optionsDietary Supplements: Vitamins, Minerals, Herbs, etc.Meditation, Prayer, Talk Therapy, Affirmations, Journaling, etc.Diet, various diets will be observedExercise, physical therapy, occupational therapy, speech therapy, sauna, EMS, massage and other therapiesALS medications and other medications

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
ALSFRS-R ALS Functional Rating Scale - Revised
Measured over 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.
+2 more outcomes measured

Conditions

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

Explore related trials

Amyotrophic Lateral SclerosisMotor Neuron DiseasePrimary Lateral Sclerosis

NCT07233148

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Virtual

    Park City, Utahstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

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

Who to contact

Healing ALS Study Administrator
[email protected]
1-973-714-4621
Email the study team

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Eligibility criteria

Inclusion

Diagnosed with ALS, MND or PLS

Exclusion

Smokers

What this trial measures

  • ALSFRS-R ALS Functional Rating Scale - RevisedParticipants 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.

    ALS Functional Ratings Scale is a set of 12 questions, with a maximum of 4 points per question and measures physical functionality. Outcomes are measured at a point in time and range from 0 for no functionality to 48 for full functionality in all areas measured. The higher the score the better the outcome.

  • ALSSQ ALS Supplementary QuestionnaireParticipants 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.

    ALS Supplementary Questionnaire (ALSSQ) is a measure of physical functionality and symptoms that are not measured in the ALSFRS-R scale. Items measured in the ALSSQ are energy level, sleep quality and quantity, pain, fasciculations, muscle cramps, mucous, mental clarity, head drop and showing emotions inappropriately. There are 18 questions, 4 points each, for a maximum of 72 points. The higher this score, the better the outcome.

  • Mindset ScoreParticipants 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.

    Mindset is measured by questions about A) positivity, maximum 400 points, B) belief in ability to get well and mental blocks to healing, maximum 18 points, and C) a Modified PANAS (Positive and Negative Affect Schedule), maximum of 50 positive points and 50 negative points. The investigators will analyze how these measures of mindset correlate with ALS/MND/PLS outcomes.