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Life and Religion

Panel recommends name change for common disorder
Experts say the name of a condition affecting 5 million women is a distraction
Published Thursday, February 7, 2013 7:30 am
by Michaela L. Duckett

Polycystic ovary syndrome, or PCOS, is a common disorder that affects approximately 5 million reproductive-aged women in the United States. Women with PCOS have difficulty becoming pregnant due to hormone imbalances.

An independent panel of experts recently convened by the National Institutes of Health wants the disorder’s name to change. They say the current name is causing confusion and creating a barrier to research and effective patient care.

“The name PCOS is a distraction that impedes progress,” said Dr. Robert A. Rizza, panel member and professor of medicine at the Mayo Clinic in Rochester, Minn. “It is time to assign a name that reflects the complex interactions that characterize the syndrome. The right name will enhance recognition of this issue and assist in expanding research support.”

The current name focuses on ovarian cysts, a criterion which is neither necessary nor sufficient to diagnose the syndrome. Women with PCOS also often experience irregular or no menstrual cycles, acne, weight gain, excess hair growth on the face or body, thinning scalp hair and ovarian cysts. They are also at risk for type 2 diabetes, high cholesterol and hypertension.

The NIH Office of Disease Prevention convened an evidence-based methodology workshop in December to study PCOS and examine various diagnostic criteria, causes, and optimal prevention and treatment strategies.

In addition to a name change, the panel also recommended that well-designed, multiethnic studies be conducted to determine factors, such as obesity, that exacerbate a genetic predisposition. The panel also determined the need for additional research to identify risks and treatments for complications and how to manage common symptoms.

The causes of PCOS are not well understood. Some studies suggest a strong genetic component. Others find that environmental factors play an important role.

“Additional studies are needed to identify new treatments that address the most common symptoms women face, such as weight gain and difficulty becoming pregnant,” said Dr. Pamela Ouyang, panel member and director of the Women’s Cardiovascular Health Center at Johns Hopkins Bayview Medical Center in Baltimore. “We also need studies to determine a woman’s risk for cardiovascular and other complications and if treatment can reduce these risks.”

Additional information about the NIH evidence-based methodology workshop on polycystic ovary syndrome is available online at www.prevention.nih.gov/workshops/2012/pcos


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