PatientsLikeMe, an online community where individuals can track their conditions and compare symptoms with algorithmically-similar patients, just published in Nature Biotechnology what it calls “a patient-initiated observational study refuting a 2008 published study that claimed lithium carbonate could slow the progression of the neurodegenerative disease, amyotrophic lateral sclerosis (ALS).”
The story in the Wall Street Journal adds:
“A new clinical trial found that lithium didn’t slow the progression of Lou Gehrig’s disease, but the findings released Sunday also showed that the use of a social network to enroll patients and report and collect data may deliver dividends for future studies. The study was based on data contributed by 596 patients with the disease, formally called amyotrophic lateral sclerosis or ALS. By showing that the drug didn’t have any effect on progression of the condition, it contradicted a small study three years ago that suggested such a benefit was possible. The new study, published online in the journal Nature Biotechnology, represents an early example of how social networking could play a role in clinical trials, an area of medical science with strict procedures that many would consider especially difficult to apply in the online world.” [via]
One thought on “World’s first crowdsourced clinical trial?”
Leaders in clinical study management, such as Dr. Steven Cummings, director of the San Francisco Coordinating Center, are also moving to online tools to increase the efficiency of conducting trials. Read more in the San Francisco Chronicle article from May 6, 2011.
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