Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

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.

Participating Centers:

The Centers for Vulvovaginal Disorders (Washington, DC)
Contact Hillary Tolson
202-887-0568
Principal Investigator: Andrew T. Goldstein, MD

Pelvic & Sexual Health Institute (Philadelphia, PA)
Contact Elizabeth Elias, CCRC
215-863-8100
Principal Investigator: Kristene Whitmore, MD
Co-Investigator: Susan Kellogg-Spadt, PhD, PA-C

San Diego Sexual Medicine (San Diego, CA)
Contact Margaret Carr
619-265-7691, information@sdsm.info
Principal Investigator: Irwin Goldstein, MD

Arizona Vulva Clinic (Phoenix, AZ)
Contact Gabrielle Rodriguez
602-265-1112
Principal Investigator: Joseph Brooks, MD

New York Center for Women’s Health Research (New York, NY)
Contact Lauren Pellegrino, WHNP-BE
649-290-9560
Principal Investigator: Kenneth A. Levey, MD

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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 katerina.capote@flhosp.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
Denver, Colorado
Fort Lauderdale, Florida (coming soon)
Orlando, Florida
Annapolis, Maryland
New York City, New York (coming soon)
Akron, Ohio

 

Invitation to Participate in VVS Research February 1, 2009

Filed under: Research,Support Group — Katie E @ 4:58 pm
Tags: , ,

We received this invitation from an undergraduate researcher.

“This is an invitation to participate in undergraduate research conducted by Ms Kate Flynn, under the supervision of Dr. Rebecca Knibb at the University of Derby.

Participation involves an interview of up to thirty minutes. This can be conducted via live chat facilities. The interview covers such areas as your experience of vulvodynia, your reasons for seeking out online resources relating to vulvodynia, and the benefits and disadvantages you have experienced while using them.

Participation in the study is completely voluntary and is open to all women aged 18 or over. Your answers will be quoted as part of an undergraduate research project, however the researcher will not use your real name, thereby assuring the information you provide will remain anonymous. You can withdraw from the study at any time.

If you would like to ask any questions regarding the study or express an interest in participating, please contact the researcher using the details below.

Thank you for your time.

  • If you’d like to participate in the online survey click HERE.
  • If you’d like to participate in the full study please email us at vvssupport@gmail.com and we’ll send you the contact information.

Enjoy!