Monday, April 25, 2011

PatientsLikeMe uses social network for ALS study

By Julie M. Donnelly, Boston Business Journal

PatientsLikeMe, a social network that connects patients with various chronic conditions, has published a study in the journal Nature Biotechnology arguing that lithium carbonate does not slow the progression of ALS, also known as Lou Gehrig’s disease.

The Cambridge-based company said that contrary to a 2008 study, which was published by the National Academy of Sciences, its review of self-reported data from 348 ALS patients using lithium off-label for ALS found that the patients did not experience an observable effect on disease progression.

“This is the first time a social network has been used to evaluate a treatment in a patient population in real time,” PatientsLikeMe co-founder Jamie Heywood said in a statement. “While not a replacement for the gold standard double blind clinical trial, our platform can provide supplementary data to support effective decision-making in medicine and discovery.”

The company used an algorithm to compare ALS patients taking lithium to those with similar disease courses, who were not taking the drug.

PatientsLikeMe asks members to share their experiences with symptoms and treatments, and gives members rating scales so that they can track their health status day-to-day, and track patterns over time. The company says its community now includes more than 100,000 patients and 500 conditions.