Healing ALS Registry Observational Study (HAROS)

🩺 Protocol 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.

Primary Research Facility: Virtual (Park City, Utah)

Review these 3 basic logistical and protocol criteria extracted from the public NIH record. (This is a preliminary logistical checklist, not an official clinical eligibility determination).

Diagnosed with, undergoing evaluation for, or seeking treatment related to Amyotrophic Lateral Sclerosis (ALS)?

🔍 Study Population / Focus Area (Source: Protocol Primary Condition)

Aged between 18 Years and 110 Years?

🔍 Protocol Specified Age Range: 18 Years to 110 Years

Able to attend required clinic visits at Virtual (Park City, Utah)?

🔍 Logistical Requirement: Site at Virtual

📍 Primary Site Map

Site: Virtual — Park City, Utah

💰 Clinical Trial Costs & Insurance Coverage

Coverage for clinical trial participation varies depending on your health insurance policy, state legislation, and whether specific procedures are investigational research or routine medical care. Under federal law (Affordable Care Act § 2709), health insurers generally cannot drop coverage or refuse to pay for routine patient care costs incurred in approved clinical trials.

💡 Always ask the study coordinator for the trial's official Informed Consent Form, which outlines all sponsor-funded research items versus procedures billed to your insurance.