Important Survey from NVA! June 11, 2013
Clinical Trial Seeking Women in AZ, CA, DC, PA & NY September 22, 2012
A Randomized, Double-Blind, Placebo-Controlled Research Study to Evaluate a
Novel Vulvar Cream Containing Cutaneous Lysate for Provoked Vestibulodynia
Women between the ages of 20 and 55 who are not pregnant or breastfeeding may be eligible to participate in this study. Women must experience pain with tampon insertion and/or intercourse that affects their sexual function, and practice a reliable form of birth control. Those with a history of diabetes, heart disease, HIV, hepatitis B or C, or menopause are not eligible. Women must be able to attend two clinic visits, plus two telephone interviews, and complete all questionnaires in English over the course of the 12-week study. The study cream and other related study tests will be provided at no cost.
The Centers for Vulvovaginal Disorders (Washington, DC)
Contact Hillary Tolson
Principal Investigator: Andrew T. Goldstein, MD
Pelvic & Sexual Health Institute (Philadelphia, PA)
Contact Elizabeth Elias, CCRC
Principal Investigator: Kristene Whitmore, MD
Co-Investigator: Susan Kellogg-Spadt, PhD, PA-C
San Diego Sexual Medicine (San Diego, CA)
Contact Margaret Carr
Principal Investigator: Irwin Goldstein, MD
Arizona Vulva Clinic (Phoenix, AZ)
Contact Gabrielle Rodriguez
Principal Investigator: Joseph Brooks, MD
New York Center for Women’s Health Research (New York, NY)
Contact Lauren Pellegrino, WHNP-BE
Principal Investigator: Kenneth A. Levey, MD
Help NVA Collect Vital Information on Treatment Effectiveness September 15, 2012
NVA is committed to continuing its support of the first National Vulvodynia Treatment Outcomes Registry, because due to a lack of research, women with vulvodynia, as well as their clinicians, have little to no scientific evidence on which to base important treatment choices. Currently as many as 30 different therapies are used to treat vulvodynia, but we don’t know which treatments work for whom. Without the billions of dollars necessary to conduct controlled trials of all of these therapies, the Registry project simply tracks women as they are diagnosed and undergo treatment to collect this vital data. Rather than experimenting with treatments for months to years to determine what’s effective, women and their physicians will be able to use the data generated by the Registry project to know how effective certain treatments are for different vulvodynia subgroups before initiating treatment.
Women age 21 and older may be eligible to participate in this important study. Registry investigators collect a wealth of neurological, infectious, immunological and genetic data from participants at several time points after initiating treatment – all of which will be correlated to the effectiveness of different vulvodynia therapies. This study will not only lead to the identification of factors that can predict treatment effectiveness, but will help us understand the underlying mechanisms associated with different vulvodynia subtypes.
Participation is voluntary, does not include any experimentation, does not change women’s treatment recommendations, and does not provide free medical care.
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 firstname.lastname@example.org.
Medical professionals interested in obtaining Registry flyers to distribute to their patients should also contact Ms. Capote.
To read more about the project, including information on the Registry Investigators, please visit NVA’s web site.
Registry sites are located in:
Little Rock, Arkansas
Los Angeles, California
Fort Lauderdale, Florida (coming soon)
New York City, New York (coming soon)
The University of Tennessee Health Science Center (Memphis) is looking for women to take part in a Multicenter Controlled Trial of Gabapentin for Vulvodynia. Women with vulvodynia between the ages of 18 and 50 may be eligible to participate in this clinical research study that seeks to determine the effectiveness of Gabapentin-ER in relieving symptoms associated with Provoked Vestibulodynia (PVD, also known as “vulvar vestibulitis” or “vulvodynia”). Gabapentin is approved for the treatment of neuropathic pain and may be effective in treating pain in other conditions, such as PVD. All participants will receive the study medication and placebo treatment (or inert substance) will be used. Participation is voluntary. The research study involves 7 visits over an 18-week period and participants will be asked to keep an electronic daily diary to record pain levels.
Contact: To learn more about this study, or to participate, please contact Dr. Michelle Washington by phone (901-448-1500) or email (email@example.com).
Principal Investigator: Candace Brown, PharmD
UCLA Brain Imaging Study June 12, 2012
UCLA Brain Imaging Study
Women between the ages of 18 and 55 who have been diagnosed with Provoked Vestibulodynia (formerly vulvar vestibulitis syndrome), or are experiencing chronic pain at the vaginal opening with/without intercourse may be eligible to participate in this study. Women must be right-handed and cannot be pregnant. Participation involves two visits over approximately 2-4 weeks. Dr. Emeran Mayer at the UCLA Center for Neurobiology of Stress (www.uclacns.org) will conduct brain imaging tests (fMRI) to understand how chronic vulvar pain may affect the brain’s activity and structure. Participants can earn up to $75 and will receive a picture of their brain.
For more information, please contact Dr. Andrea Rapkin (310-825-6963).
Reminder: Facebook April 24, 2012
We have an active group of phenomenal ladies (of all ages, from all over the world) on Facebook!
Note: It is for women only. Requests to join will be approved by an administrator. Apparently, the Facebook “rules” are that it can be an open group, closed group, or secret group. The thing is, we want it to be exclusive to the women who want to be in the group & no one else, but we want it to be available to any woman who does a Facebook search to find the group. However – the list of members belonging to the group is not private. Kinda sucks, I know – but that’s the way Facebook has it. I’ve complained!
Well, it’s pretty much basic info, but it might be helpful to someone anyway! Good reminders, too.