CureTogether was started in July 2008 as a way for patients to aggregate their anonymous medical data into an open-source database that can be used by any researcher in the world. They started with three conditions – migraine, endometriosis, and vulvodynia but now count more than 400 on their radar.
There are plenty of precedents to social networking websites for patients, so nothing new from that perspective. But as I read more about this one, it stood apart. The idea of a patient collective focusing on obscure, lifestyle-affecting, painful, chronic and under-researched diseases and making their raw data available is pretty cool. This WSJ article talks about trend of ‘Personal Informatics’ emerging- where affected individuals obsessively record everything about their life and share it with others. This may usually sound useless and weird, but given the fact that there is no definitive causal understanding of conditions like migraine (even though it affects millions of Americans each year), I find it novel and exciting.
I like this bottom-up, organic approach to furthering research on obscure conditions. Their call for Open-Source Health Research is also an interesting read. Bit worried by the fact that CureTogether is self-funded. Hopefully they will stay around long enough to claim a large-scale success for one of the diseases.