Friday, January 23, 2009

Online Research Study - Vulvodynia

From the Facebook group Vulvodynia Support:
**Participants Needed for Online Research Study**

NVA supporter Alexandra Carmichael, a scientist and former vulvodynia sufferer, is conducting a study on vulvodynia through the website she co-founded, CureTogether. Specifically, she is gathering self-reported data on symptoms, treatments, and triggers for vulvodynia. Her goal is to discover associations in this data to help characterize which vulvodynia treatments work best for patients with different groups of symptoms. With enough women, a genome-wide association study can be conducted to locate any genes or genetic regions that are associated with vulvodynia.

There are currently 155 women with vulvodynia who have joined the CureTogether study. A genome-wide association study requires 2,000 patients, so at this time Alexandra is calling for women with vulvodynia to join the study. Participation is entirely voluntary, anonymous, and completely confidential. It involves joining the CureTogether study at the website provided, then checking off and rating symptoms and treatments. It should take 15-20 minutes to complete. Statistics for the study are posted live so you will be able to see them after completing your entry. You will also be notified when the genetic study is set to begin, with an option to participate or not.

About CureTogether: CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.

If you are interested in learning more about the study or to participate, please visit CureTogether or email Alexandra at
Link to the study:

CureTogether is a great resource for a mystery condition such as vulvodynia -- it enables sufferers to compare symptoms and treatments, expanding the knowledge base from doctors and vulvodynia literature to include patients themselves. And honestly, I think I've learned more about vulvodynia and interstitial cystitis reading about patients' experiences than I have from any other source. Kudos to CureTogether!


  1. Hi Esther,
    Thank you so much for spreading the word about the vulvodynia study, and also for your wonderful comment! I'm so glad you are finding CureTogether to be helpful - that's why we work on it so much, but we can sometimes lose perspective so it's great to have feedback. :)
    Wishing you a wonderful day,
    Co-Founder, CureTogether

  2. You're welcome, Alexandra! I really admire the efforts you've made to promote vulvodynia awareness and research. If you ever need any help spreading the word, feel free to ask!