New Organization Tracks Off-Label ALS Treatments

The American ALS Research Group created ALSUntangled to scientifically review alternative or off-label treatments and allow patients with ALS to make more informed decisions about whether to try these remedies

Patients with amyotrophic lateral sclerosis (ALS) often turn to the Internet in search of treatment.

In an abstract to be presented April 21 at the American Academy of Neurology meeting in Washington, DC., Richard Bedlack, MD, PhD, of Duke University Medical Center in Durham NC reports on a new organization meant to track ALS “cures” offered on the web.

The American ALS Research Group created ALSUntangled to scientifically review these alternative or off-label treatments and allow patients with ALS to make more informed decisions about whether to try these remedies.

To date, Bedlack said, the organization has received requests to evaluate more than 160 such purported treatments, requests sent to the group’s 90 clinicians and scientists from 10 different countries.

It has completed 26 reviews, available at www.alsuntangled.com.

To evaluate the types of evidence the group decided to use a grading system that notes whether the information on whether a remedy works is pre-clinical data, anecdotal data, or from trials. In addition, it notes the mechanism by which the treatment is supposed to work and lists the potential risks of trying it.

To make the information as useful as possible, the group held an in-person meeting to reach consensus on what to say about each alternative treatment—something it had been trying to do by email exchanges.

That was successful, Bedlack said. As a result “The ALSUntangled Table of Evidence facilitates simple, objective, reliable and timely review of off-label treatments”