Sunday, a new study was published online in Nature Biotechnology about lithium and Lou Gehrig’s disease. The study found that lithium didn’t help slow the progression of the disease, a contradiction from a 2008 study. After that 2008 study, people part of the PatientsLikeMe ALS site suggested they share their experience with lithium online. The site helped set up a way to study these patients’ posts.
From the Journal:
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 conventional studies, patients are randomly assigned to a treatment or control group to reduce sources of bias. Neither doctors nor patients know who is getting the drug.In the on-line 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 didn’t take the drug. A total of 447 patients were among this group that researchers considered controls.
The study didn’t find any difference in disease progression a year after treatment between those taking lithium and the control group, researchers said.
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