A patient advocacy and educational group called PatientsLikeMe and the Duke ALS Clinic have joined forces to study the effect of dietary supplement Lunasin on people who have amyotrophic lateral sclerosis (ALS).
The study is being called a “virtual trial” of a supplement that’s already on the market. The trial came about after a patient with ALS reported regaining function in speaking and swallowing after taking the supplement.
Lunasin has been studied for its possible abilities to reduce cholesterol and inflammation, and to possibly reduce the risk of developing some forms of cancer. Lunasin is found in soybeans, oats and other grains.
The year-long study will measure study participants’ reactions to Lunasin, and participants will note their weight and complete the ALS Functional Rating Scale every month on PatientsLikeMe.com.
The PatientsLikeMe online community gathers self-reported information and experiences from people who have various medical conditions, in hopes of offering support and, in the case of the Lunasin study, providing researchers with valuable patient data.
The 50 ALS patients in the study will also travel periodically to the Duke ALS Clinic in Durham, N.C.
In an Oct. 25 news announcement, Duke ALS Clinic Director Richard Bedlack, M.D., said the user-friendly study was able to reach its target enrollment of 50 ALS patients in about five months.
“There are no placebos, and we made the inclusion criteria very broad so that even ALS patients who can’t qualify for other studies due to their long disease duration or use of a ventilator can qualify,” he said. “We’re also limiting the burden on the participants by helping them check in online from the comfort of home. And we’ve already published the protocol on our ALS Reversals Web site. We’re taking a completely open approach so that anyone, anywhere, can see the details of what we’re testing and learn more about whether this is helpful, harmful, or does nothing at all. I think all of these factors made the trial very attractive to ALS patients.”
