Healing ALS Registry Observational Study (HAROS)

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.

Description

Eligibility

Age range

18–110 years

Sex

All

Healthy volunteers

No

Interventions

• Other
  Education about treatment options

  Education about treatment options and integrative therapies is optional. It is available online and is free for all study participants.

• Dietary Supplement
  Dietary Supplements: Vitamins, Minerals, Herbs, etc.

  The investigators are observing type and quantity of dietary supplements, vitamins, minerals and herbs that ALS/MND/PLS patients take regularly.

• Behavioral
  Meditation, Prayer, Talk Therapy, Affirmations, Journaling, etc.

  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.

• Other
  Diet, various diets will be observed

  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.

• Other
  Exercise, physical therapy, occupational therapy, speech therapy, sauna, EMS, massage and other therapies

Location