Observational Study Tracking Treatments and Outcomes in Adults with ALS, MND, or PLS Using an Online Registry

What this Trial Is About

Researchers are conducting a prospective, observational online study called the Healing ALS Registry Observational Study HAROS involving people diagnosed with Amyotrophic Lateral Sclerosis ALS, Motor Neuron Disease MND, or Primary Lateral Sclerosis PLS. The study aims to verify earlier findings suggesting that these conditions may not always be fatal and could be reversible. It will also evaluate the effects of various therapies and education programs, enrolling at least 1000 participants from the USA and other countries. Participants will enter monthly data into an online registry about their functional status using the ALSFRS-R scale, symptoms, dietary intake, supplements, medications, and therapies, including integrative medicine approaches like acupuncture and meditation. Education about treatment options is available online but optional. Participants choose their own treatment plans and may participate in other studies while recording all relevant information in the registry. Throughout the study, participants will update their information monthly for at least one year and up to ten years. Researchers will assess outcomes annually using various tools such as the ALS Functional Rating Scale - Revised, supplementary questionnaires, and mindset scores. They will also track changes in weight, blood markers, and urine toxins to analyze treatment effectiveness and disease progression over time.

Healing ALS Registry Observational Study (HAROS)