Healing ALS Registry (HAROS) for people with ALS, MND, and PLS
Healing ALS Registry Observational Study (HAROS)
This fully remote registry asks people with ALS, MND, or PLS to enter monthly health, treatment, and lifestyle information to try to see which therapies and education relate to better physical outcomes.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Ages | 18 Years to 110 Years |
| Sex | All |
| Sponsor | Healing Advocates Registry and Ministry Academic / other |
| Locations | 1 site (Park City, Utah) |
| Trial ID | NCT07233148 on ClinicalTrials.gov |
What this trial studies
HAROS is a prospective, fully remote observational registry enrolling at least 1,000 people diagnosed with ALS, MND, or PLS who will complete monthly online entries including ALSFRS‑R scores, symptoms, medications, supplements, diets, therapies, and hours of self‑study or education. The study will correlate these longitudinal patient-reported data with physical outcomes to identify patterns linked with slower progression or improved function. Investigators will analyze conventional and integrative medicine approaches and educational engagement to explore associations with clinical trajectories. Data will be contributed by participants in the U.S. and other countries and analyzed to generate hypotheses for future controlled research.
Who should consider this trial
Good fit: Adults diagnosed with ALS, MND, or PLS (preferably neurologist-confirmed) who can reliably complete monthly online data entry and are willing to report treatments and outcomes; active smokers are excluded.
Not a fit: People who smoke, cannot complete regular online entries, or are seeking access to experimental drug treatments are unlikely to receive direct benefit from this observational registry.
Why it matters
Potential benefit: If successful, the registry could highlight treatments, behaviors, or education programs associated with better function or slower progression and inform care choices and future trials.
How similar studies have performed: A small 45-patient retrospective registry analysis reported better-than-predicted outcomes, but large prospective evidence supporting integrative approaches in ALS is still limited.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosed with ALS, MND or PLS Exclusion Criteria: * Smokers
Where this trial is running
Park City, Utah
- Virtual — Park City, Utah, United States (Recruiting)
Study contacts
- Principal investigator: William L Cowden, MD — Chair of Scientific Board of Academy of Comprehensive Integrative Medicine, Co-chair of Medical Advisory Team of Healing ALS
- Study coordinator: Healing ALS Study Administrator
- Email: Study@HealingALS.org
- Phone: 1-973-714-4621
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.