The Wall Street Journal's Health blog follows up on last week's news that PatientsLikeMe, a Cambridge, MA company, is using its social network to complement clinical trials with real-world case studies of the use of lithium to slow down Lou Gehrig's disease (ALS). The company used its own algorithm on patients in its network to refute findings of a 2008 study showing that lithium could slow down progression of ALS. PatientsLikeMe found that lithium did not slow down ALS progression. WSJ blogger Amy Dockser Marcus asks whether trials and studies driven by patient social networks are a viable option.
The answer, according to many patient advocacy groups, is yes--especially if we're talking about off-label uses for drugs, vitamins and other treatments, or even approved treatments for rare drugs. Jerry Call of the Life Raft Group, which supports patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor), told Marcus that the group's registry has data from more than 1,300 patients, many of which take the approved drug Gleevec. Even with an approved drug, "when you get into a rare patient population, it's difficult to do a trial to answer every question," Call told the Health Blog. The registry "can fill some of the gaps, answer a question in a more timely manner or generate a hypothesis that might be further tested in a clinical trial," Call said.
Marcus also writes about LAMsight, an online community for those who suffer from LAM--a rare, fatal, multi-system disease affecting women in their childbearing years. The sight was created, in part, because potentially usesful data is often "locked up in databases that only clinicians can get access to," LAMsight designer Ian Eslick told the Health Blog. "Research happens outside the clinical environment," Eslick said. "The question now is what is the proper way of managing it and feeding it back into traditional science."