Patients with ALS often consider alternative or off-label treatments (AOTs) they read about on the internet. Internet information about AOTs is not always accurate. In 2009, members of the North American ALS Research Group (ALSRG) started ALSUntangled to scientifically review alternative treatments and help patients and families make more informed decisions about them.
There are 3 parts to ALSUntangled: getting ideas for reviews, conducting the reviews, and getting our reviews out to patients and families.
New ideas are listed on our Future Reviews page. We get a lot of great ideas so we have to prioritize them in some way. People can vote for the idea that are most interested in
just by clicking on the “vote” button next to it. We combine votes with a “multiplier”
which takes into account how much useful disclosable information we can find on an
idea. Unfortunately, if we cannot find any useful disclosable information on an idea, we
cannot write a review on it.
We have standard operating protocols by which we conduct our reviews. We start with
attempts to contact the proponents of the AOT. We gather materials used to advertise
the AOT to determine what claims are being made about it. A PubMed search is
conducted to determine if there are relevant scientific publications. A Google search is
conducted to review any related news items or blogs. The ALSUntangled review team is
polled to see if any patients under their care have tried the AOT and what happened to
them. The PRO-ACT database and PatientsLikeMe are queried, and if patients trying the AOT are identified, their available outcome measures before and after the AOT are
reported. Attempts are made to visit the clinic offering the AOT to review its infrastructure, oversight, and consent processes, interview patients who are trying it, and review medical charts on the clinic’s best successes.
Once we have all this data gathered, we use it to complete something called the Table
of Evidence for the review. There are 5 categories in the Table of Evidence: Mechanistic
Plausibility, Pre-Clinical Data, Cases, Trials, and Risks. We give every ALTERNATIVE
TREATMENT a letter grade in each of these 5 categories: A, B, C, D, F or U. Specific cut-offs for achieving each of these have been developed are available on our website
Finally, an ALSUntangled team member writes a first draft of the review and the team of more than 100 clinicians and scientists from across 11 different countries provides edits via email. When the team is satisfied, the review is submitted to the journal
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration and, if approved, it is
published. Our reports are Free Open Access, meaning they are freely available for all to read. You can read any of our reviews by clicking on the name of the AOT on our
Completed Reviews page. You can also listen to short podcast interviews about many of
our reviews. Links to these podcasts are also found on the Completed Reviews page.
We sincerely hope that ALSUntangled helps patients and families make more informed
decisions about Internet AOTs.