New Treatment Registry Cities with the NVA…

Please read the email below that I received for the NVA for enrollment in their new treatment registries around the country. I really encourage everyone to participate in this- as many of you know, finding a good and knowledgeable Doctor who treats Vulvodynia is hard to come by. I made a decision to not move to one of these cities on the targeted registry because I could not find a specialist I approved of… Hopefully you all will help pave the way for others…

 

Email begins from chris@nva.org :

We Need Your Help to Study the Effectiveness of Vulvodynia Treatments

Vulvodynia Treatment Registry to Enroll 400 Women in 2012 

 

Due to a prior lack of research, women with vulvodynia have almost no scientific information to help guide them in making important decisions about their medical treatment. Although medical professionals report utilizing as many as 30 different therapies to manage vulvodynia symptoms, currently, women can only determine treatment effectiveness through a trial-and-error process that can take many months.

 

Simply put, this is unacceptable and is the reason why NVA funded the National Vulvodynia Treatment Outcomes Registry. Women who participate in this important project are followed at one of eight Registry sites (see below) for one year after initiating vulvodynia treatment. Participation is voluntary, does not include any experimentation and does not change women’s treatment recommendations. In addition to generating vital data on the effectiveness of treatments for different vulvodynia subtypes, collected information will help to identify factors that can predict treatment success and guide the development of large controlled trials of promising therapies. Additionally, we recently expanded the Registry project to include postmenopausal women, since this group is routinely excluded from research studies, as well as the collection of DNA samples, which will be used for genetic analyses.

 

Over the next 12 months, Investigators from nine states will enroll an additional 400 women in the Registry project. To speak to the Registry’s Research Coordinator Katy Capote about participating at any of the sites, please call 407-303-2721 or send an email to katerina.capote@flhosp.org. To read more about the project, including information on the Registry Investigators, please visit NVA’s web site. Medical professionals interested in obtaining Registry flyers to distribute to their patients should also contact Ms. Capote.

 

Registry sites are located in:

Arkansas (Little Rock)

California (Los Angeles)

Colorado (Denver)

Florida (Fort Lauderdale – coming soon)

Florida (Orlando)

Maryland (Annapolis)

New York (New York City – coming soon)

Ohio (Akron)

Pennsylvania (Pittsburgh – coming soon)

Washington DC

Email ends.