PatientsLikeMe study challenges prior ALS claims

PatientsLikeMe is making some waves in the research world about the potential of its patient social network to provide insights into the health of people with serious diseases. The Cambridge, MA-based company says today that it published research from its online community in Nature Biotechnology that refutes findings from a previous study of using lithium carbonate to slow the progression of amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease.

The firm's study methods aren't meant to replace double-blind control trials, yet it's making a case for using its social network to test the benefits of treatments in real-world cases. The firm says it developed an algorithm to match 149 ALS patients from its online community who reported taking lithium with other patients with the neurodegenerative disease and a similar disease course. Based on this method of analysis, the study found that after 12 months lithium had no effect on disease progression. The study counters a study published in 2008 in the Proceedings of the National Academy of Sciences that claimed that lithium treatment could slow the progression of ALS.

"This is the first time a social network has been used to evaluate a treatment in a patient population in real time," stated PatientsLikeMe chairman Jamie Heywood, who co-founded the company during his late brother Stephen Heywood's battle with ALS. "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."

PatientsLikeMe's lithium study is more proof that the company wants to make inroads in the disease research field with its social network. The company, which says it has more than 100,000 people on its website, opened its social network to people with all illnesses early this month after limiting membership to people with certain chronic diseases for years.

- read the paper in Nature Biotechnology
- here's the company's release