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Mind and Body

ALS Study Shows Social Media's Value as Research Tool

A new clinical trial found that lithium did not slow the progression of Lou Gehrig's disease, but the findings also showed that the use of a social network to enroll patients and report and collect data may deliver dividends for future studies, The Wall Street Journal reported Monday.

The study, the findings of which were released Sunday, was based on data contributed by 596 patients with the disease, formally called amyotrophic lateral sclerosis or ALS. By showing that the drug did not 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.

In many diseases, "sometimes the alternative is not our way or the old way. It is our way or it is not studied at all,'' said Paul Wicks, the co-author of the paper and the research and development director at PatientsLikeMe, a closely-held health data sharing company in Cambridge, Mass., that ran the lithium study.

More than 4,300 patients are on the PatientsLikeMe ALS site, where they frequently share information on how their disease is progressing and strategies they are using to fight it.

Jamie Heywood, chairman and co-founder of PatientsLikeMe, said the idea for the new study came from patients. After the 2008 paper reporting lithium slowed down the disease in 16 ALS patients, some members of the site suggested posting their experiences with the drug in an online spreadsheet to figure out if it was working. PatientsLikeMe offered instead to run a more rigorous observational study with members of the network to increase chances of getting a valid result.

The company developed a tool to standardize collection of patient data, including lithium blood levels in patients. They used a questionnaire from conventional ALS trials to gather patients' self-reported data on functions such as swallowing, walking and breathing.

In the online study, patients decided themselves if they wanted to take lithium. They needed to persuade a doctor to write a prescription. They were also able to see on the website how others taking the drug were faring in real-time. All of this raised chances that the study could lead to a false conclusion.

To address the concern, PatientsLikeMe developed an algorithm that matched 149 patients taking lithium with at least one other ALS patient on the site who did not take the drug. A total of 447 patients were among this group that researchers considered controls.

Click here to read more on this story from the Wall Street Journal.