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.
Ideas for reviews can be sent to us via an email to Dr. Rick Bedlack at bedla001@mc.duke.edu
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.