The Willis-Ekbom Disease (WED) Foundation and XenoPort, Inc. (Nasdaq: XNPT) announced today that they have launched a new “Patient Odyssey” survey, aimed at measuring the challenges of long-term disease management, quality of life (QoL) impact and emotional burden associated with restless legs syndrome/Willis-Ekbom Disease (RLS/WED) among patients, as well as the impact of the disease on relationships with spouses or partners. The survey kicks off during this year’s National RLS/WED Awareness Week, dedicated to the continuation of education that improves diagnosis and treatment of the disease.
“The Foundation looks forward to working with our constituency to dive deeper into the long-term impact of RLS/WED on the patient, including a first-time focus on the impact of the disease from the perspective of spouses and partners,” said Georgianna Bell, executive director of the Willis-Ekbom Disease Foundation. “We hope that the findings of this survey reveal new ways that our organization can provide support to the RLS/WED community, as well as serve as an important educational tool that helps the greater public understand the serious burden of this disease.”
In 2012, the WED Foundation conducted an analysis to examine the patterns, causes and effects of RLS/WED in patients including symptom severity, sleep disturbance and medication dosing for both RLS/WED and comorbid conditions. These findings will be presented at the 2013 World Association of Sleep Medicine (WASM) Congress in Valencia, Spain, from September 28-October 2, 2013. The new “Patient Odyssey” survey is designed to build upon findings from the 2012 survey.
“We are excited to support the WED Foundation on this initiative so that collectively we can better understand the needs of patients with RLS/WED, many of whom have the disease for life and struggle to find optimal disease management plans,” stated Ronald W. Barrett, Ph.D., chief executive officer of XenoPort, Inc. “Our goal with this project is to uncover the patient journey and potentially determine how we can improve the lives of these patients and provide support for their loved ones.”