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Children’s Hospital opens comprehensive Prader-Willi syndrome clinic

Jan. 8, 2018, 3:39 PM

A comprehensive, multidisciplinary clinic serving patients with Prader-Willi syndrome recently opened at Monroe Carell Jr. Children’s Hospital at Vanderbilt.

Prader-Willi syndrome (PWS) is a complex genetic disorder that affects appetite, growth, metabolism, cognitive function and behavior.

It is characterized by the inability to achieve satiety, developmental delays and intellectual disability, short stature, behavioral concerns, sleep abnormalities and underdeveloped sex organs.

Under the leadership of Jessica Duis, MD, MS, Children’s Hospital has brought multiple specialties under one umbrella to allow patients and families to receive more thorough and comprehensive care.

On designated days, patients can see specialists in the areas of Genetics, Endocrinology, Sleep Medicine, Pulmonology, Neurology, Nutrition and Behavior.

As the first of its kind in the region, the clinic aims to provide up-to-date clinical care and bring new therapies to individuals with PWS, which affects one in 10,000-15,000 people.

“We are so excited to be available as a resource to families and individuals with Prader-Willi syndrome,” said Duis, assistant professor of Pediatrics. “Our aim is to provide care for all aspects of PWS, from growth delays to skin picking to hyperphagia. There are so many therapies out there that families are trying, but we don’t know if they have a benefit. Our goal is to understand what evidence there is for each intervention, bring new therapies, run clinical trials to learn more and provide a standard of care to persons with PWS. We want to reach every family no matter where they live, and we have an infrastructure in place to help families get to us to be seen.”

An integral part of the patients’ care is nutritional and behavioral counseling to help implement diet and environmental controls. Prior to the clinic’s opening, many patients with PWS in the region received all of their services from primary care physicians, and few of them had a dedicated nutritionist or behavioral specialist.

“The clinic offers so much to families. We have a collaborative discussion about each and every individual to make sure we are providing the best care possible. One of the most rewarding parts of the clinic has been introducing the patients to one another. They feel so proud and such a connection. They have even shared diet records with one another in clinic,” Duis said.

In addition to clinical care, the Vanderbilt Kennedy Center conducts ongoing research on PWS lead by Elisabeth Dykens, PhD, and the clinic behavioral specialist, Elizabeth Roof, MA.

For more information on the new PWS clinic at Vanderbilt, visit: https://www.childrenshospital.vanderbilt.org/services.php?mid=12670.

 

 

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