WED Foundation and XenoPort Announce Preliminary Results from the “Patient Odyssey” Survey
November 13 2013 - 8:30AM
Business Wire
-- Survey Reveals Significant Long-Term
Challenges in RLS/WED Management --
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 (www.Willis-Ekbom.org);
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.”
The survey was conducted by the WED Foundation and made possible
through a corporate sponsorship from XenoPort, Inc. It was
distributed to members of the WED Foundation and their
spouses/partners via mail and was available online throughout the
month of October.
About Restless Legs Syndrome/Willis-Ekbom Disease
RLS/WED affects people of all ages, genders and races. People
who have the disease have to move their legs or arms to relieve
uncomfortable, sometimes painful sensations. These sensations tend
to get worse when the person is at rest, like when sitting or lying
down, watching television or taking a long car ride. Because
symptoms usually intensify in the evening, they often interfere
with the ability to sleep.
While the causes of RLS/WED are not completely understood,
several genes have been identified with an increased risk of
RLS/WED. Other factors thought to contribute to the disease include
iron metabolism and, possibly, abnormalities in the
neurotransmitters dopamine and glutamate.
While there is not yet a cure for RLS/WED, treatment is
available.
About the WED Foundation
The WED Foundation is dedicated to improving the lives of men,
women and children who live with Willis-Ekbom disease. Founded in
1992 as the Restless Legs Syndrome Foundation, the organization’s
goals are to increase awareness, improve treatments, and through
research, find a cure. The WED Foundation serves healthcare
providers, researchers, over 4,000 members, and millions of
individuals in the United States and Canada. The WED Foundation has
awarded $1.4 million to fund medical research on RLS/WED causes and
treatments. For more information, please visit
http://www.Willis-Ekbom.org.
About XenoPort
XenoPort, Inc. is a biopharmaceutical company focused on
developing and commercializing a portfolio of internally discovered
product candidates for the potential treatment of neurological
disorders.
XNPT2G
The WED FoundationGeorgianna Bell,
507-287-6465bell@willis-ekbom.orgorXenoPort, Inc.Jackie Cossmon,
408-616-7220ir@XenoPort.com
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