PatientsLikeMe touts the results of a patient-initiated ALS-treatment study that indicates the benefits of social networking in clinical trials.
Social networking may someday become a part of clincal trials on medical devices and drugs.
A recent trial found that lithium carbonate didn't slow the progression of Lou Gehrig's disease, or amyotrophic lateral sclerosis (ALS), but the study also indicated that the use of a social network to enroll patients and report and collect data could facilitate future studies.
The study was based on data contributed by 596 patients with the neurodegenerative disease and published online in Nature Biotechnology. It represents an early example of how social networking could play a role in clinical trials, which have strict protocols prohibitive of any implementation in web-based media, which typically lack privacy and a any methods for clinical observation.
"This is the first time a social network has been used to evaluate a treatment in a patient population in real time," Jamie Heywood, who co-authored the study, said in prepared remarks.
"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," he said.
Heywood is co-founder of Cambridge, Mass.-based "health data-sharing website" PatientsLikeMe, which builds a social networking platform that uses health information provided by patients to help researchers study diseases.
PatientsLikeMe conducted the study by taking the 2008 research and matching it to patients who reported taking lithium with other ALS patients that had similar disease courses, the company said. PatientsLikeMe said its proprietary algorithm enabled the it to "reduce biases associated with evaluating the effects of treatments in open label, real world situations and improve the statistical power of the study making each patients contribution more meaningful," in a release touting the study's findings.
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