Thousands of patients won't take it: Online drug studies using PatientsLikeMe

Karen Felzer's father has ALS (amytotrophic lateral sclerosis), or Lou Gehrig's Disease, so she read with special interest an article about the results of a new drug. Italian researchers had published a small study in February saying that lithium, a drug used to treat bipolar disorder, seemed to slow the progress of ALS.

A scientist herself – she's a seismologist - Karen helped to launch an online study by patients of the effects of the drug. Participating patients use the web site PatientsLikeMe.com. Karen says, "We want to keep track of how people are doing on [lithium]. It's important for the whole community."

Lithium didn't seem to help her father, and he experienced some side effects, so he stopped taking the drug. That is consistent with the reports of other patients, which indicate that lithium seems much less effective than reported in the Italian study in the Proceedings of the National Academy of Sciences.

As a result, says James Heywood, the co-founder of PatientsLikeMe, less than a year after the Italian study was published, "we now have data on over 100 patients who have been on a drug long enough to demonstrate the hope of that drug was not what was originally assumed – and that means thousands of patients won't take it."

Advice to patients interested in clinical drug trials: Look into PatientsLikeMe.

Read another ALS story.

Thanks to Carolyn Johnson for the source article in the Nov. 17 issue of the Boston Globe.