PatientsLikeMe is a website where people can monitor their health and contribute towards research by sharing information on their wellbeing and symptoms. This work looked at data from people with motor neurone disease (MND) who were taking lithium carbonate to treat their condition. Despite its discussion in online forums, they found that lithium carbonate did not improve the symptoms of MND. This new approach could complement traditional randomised clinical trials.

Why was this work needed?

Motor Neurone Disease (MND) is a fatal neurodegenerative disease. It has no treatment and it is incurable. Around half of people with MND take vitamins and supplements that have not been proven to work. In 2008 a small study suggested that lithium carbonate might slow the progress of the disease and, although this is not widely accepted by the medical community, many people with MND have started taking it.

What happened?

This study used data from the website PatientsLikeMe and compared information from people using lithium carbonate with those that were not. It did not find any evidence that this treatment slows the progression of MND, which agreed with previous randomised control trials.

What were the benefits?

Research of this kind respects the views of people with MND by involving them in the research, while also playing an important role in evaluating the safety of treatments.

This approach is not a substitute for randomised control trials, but these findings do suggest that engaging with patients online has the potential for evaluating treatments already informally in use. There is also the possibility that researchers could identify new treatments, accelerating drug discovery.

What type of data was involved?

The data used in this research is recorded and submitted by patients directly onto the website, PatientsLikeMe.

Patients submit their own data to this website and opt to be involved in the research.

Who funded and collaborated on this work?

The research was run by PatientsLikeMe inc., a website which allows individuals to share information about their long-term conditions.

Where can I go for more information?

Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm