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WED Foundation And XenoPort Announce Preliminary Results From The “Patient Odyssey” Survey

The Willis-Ekbom Disease (WED) Foundation and XenoPort, Inc. (Nasdaq: XNPT) announced today the preliminary results from the “Patient Odyssey” survey, which reveal the challenges experienced by patients with Restless Legs Syndrome/Willis-Ekbom Disease (RLS/WED). The survey kicked off during this year’s National RLS/WED Awareness Week, and examined treatment, lifestyle and emotional burden on both RLS/WED patients and their spouses/partners. Results regarding treatment burden are now available on the WED Foundation website (; results regarding lifestyle and emotional burden, including spouse/partner responses, will be released in 2014.

“This initiative has provided important insights regarding management of RLS/WED, including the fact that patients continue to struggle with identifying treatments that adequately control their symptoms in the long term,” said Georgianna Bell, executive director of the Willis-Ekbom Disease Foundation. “Most RLS/WED patients have the disease for life, so understanding how to navigate disease management considerations in partnership with loved ones and physicians is important. The results of this survey will allow us to develop new resources to facilitate improved outcomes for patients, as well as serve as an important educational tool that helps the greater public understand the serious burden of this disease.”

Participants of the survey included 1,709 RLS/WED patients who are members of the WED Foundation and consisted of 1,194 women and 515 men. The results of the survey showed:
  • Almost three in four (73%) of patients reported that they experience symptoms daily
  • When asked about their current medication, only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s)
  • Sixty-eight percent of patients said they “strongly agreed” that there is a need for greater physician knowledge and understanding of RLS/WED
  • Forty-two percent of patients “agreed” that their healthcare provider does not understand their disease
  • Ninety-three percent of patients “agreed” that they wished more effective medications were available to treat RLS/WED

“The Patient Odyssey survey results mirror what I and many of my colleagues are already seeing in our practices – that patients can struggle for many years to identify the cause of their symptoms and to arrive at an appropriate disease management plan,” said Dr. Philip Becker, President, Sleep Medicine Associates of Texas and longtime member of the Medical Advisory Board of the WED Foundation. “This initiative reinforces the need to continue to educate the RLS/WED community and the physicians who treat them. Those with RLS/WED deserve knowledgeable physicians who understand the disease. A proper diagnosis and sustained treatment of RLS/WED can offer benefit to those who suffer through restless days and restless nights.”

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