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First crowdsourced health condition book by CureTogether

I presented CureTogether here a few months ago. It plans to bring together patients and scientists to create an open-source health research system. Now they are publishing the first crowdsourced health condition book created by the most active community. It means the book contains a lot of information on vulvodynia, a disorder of vulvar pain, burning, and discomfort:

  • 190 women share stories, symptoms, and triggers
  • Surprising data on co-morbid conditions
  • Detailed comments on treatments by real patients

And! All proceeds from Vulvodynia Heroes go to fund the vulvodynia data community at

Before, I said CureTogether looked promising. Now I think it does work.

3 Comments Post a comment
  1. The plural of anecdote is not equal evidence.

    February 13, 2009
  2. Thanks for the encouraging post, Berci! We’re definitely seeing a lot of support from the vulvodynia community – patients, doctors, researchers, and foundations all reaching out to help spread the message and join the research effort.

    In reply to Muir’s comment, here is the scientific disclaimer we included in the book:

    “The 190 women with vulvodynia who contributed the data presented here may not be representative of the general population of women with vulvodynia. There may be a selection bias for people who are more likely to participate in online surveys. A larger study would need to be done using alternate methods of gathering information to reach the population of patients who are not online or not inclined to participate in online surveys. However, the results presented here are informative and suggest what a portion of the vulvodynia population is experiencing.”

    Also, this first phase of CureTogether is what we think of as a giant, collaborative medical brainstorming session. The next phase will involve iterative scientific refinement of the questions asked, measures tracked, and diagnostic criteria used, which will hopefully lead to some interesting, statistically significant research discoveries.

    Stay tuned, and thanks for the comment!

    February 14, 2009

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  1. CureTogether acquired by 23andMe: An Obvious Step « ScienceRoll

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