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Health Expert Dr. Donnica Moore and UCB, Inc. Launch Choose Your Move: Take Control of RLS to Empower People Living with Restless Legs Syndrome to Take Action

RLS is a Serious but Often Misunderstood Medical Condition - New Survey Highlights Public Misperception vs. True Impact on Patients


News provided by

UCB

Dec 05, 2012, 07:00 ET

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ATLANTA, Dec. 5, 2012 /PRNewswire/ -- Health expert and patient advocate Dr. Donnica Moore and global biopharmaceutical company UCB, Inc. are launching Choose Your Move: Take Control of RLS to shed light on the real impact of Restless Legs Syndrome (RLS) and empower those living with the disease to work with their doctor to find a treatment approach that's right for them.

"Unfortunately, many people do not fully understand what it's like to live with the disease," says Dr. Moore. "RLS can have a significant impact on a person's life any time they are trying to rest and can even impact sleep."

RLS symptoms can be unpredictable and lead to exhaustion and daytime fatigue.i RLS, also known as Willis-Ekbom disease, may also affect work and personal relationships.ii People with RLS may experience uncomfortable sensations in their legs, feet, arms, torso or head and feel an irresistible need to move when they are trying to sit still or sleep to relieve these feelings. iii RLS is a recognized and often treatable neurological condition that affects up to an estimated 23 million Americans.iv

Public Misperception vs. the Real Experience of RLS
Despite the impact of RLS that has been reported by people with the condition, a new national survey of 1,000 Americans revealed that much of the public does not understand RLS or the reality of living with the disease. "A lack of understanding about the disease can lead to undiagnosed patients and may discourage those with RLS from discussing it with their doctor or family and friends," notes Dr. Moore.    

Findings from the general public survey show that:v

  • More than half of respondents (52%) didn't believe or didn't know whether RLS is even a serious medical condition.
  • A majority said that RLS symptoms have little or no impact on personal relationships (59%) or on a person's job/career (62%).
  • Nearly 40 percent said they don't know what causes RLS.
  • Eighty-three percent weren't aware of any prescription medicines approved to treat RLS.

By contrast, in a separate survey of 335 RLS patients, results found that:vi

  • Fifty-two percent of those who were highly symptomatic (experiencing symptoms two or more times a week) said that these symptoms interfered with work and/or daily activities at least once a week.
  • One-third (33%) indicated their activities are impacted almost every day.
  • Eighty-one percent said that RLS symptoms also impact their partner's life.
  • Nearly two-thirds (63%) of highly symptomatic patients have trouble relaxing at home; 43 percent avoid long car rides; and about one-quarter (24%) avoid going to the movies due to their RLS symptoms.

Dr. Moore wants those with RLS to know that there are treatment options available, including a prescription medicine approved by the FDA for moderate-to-severe primary RLS. "The goal of RLS treatment is to relieve symptoms and manage the unpredictable nature of the condition," says Dr. Moore.

Opening Up the RLS Dialogue
The Choose Your Move: Take Control of RLS campaign provides a multitude of resources for people living with the condition. The campaign's website, ChooseYourMoveRLS.com,includes information about symptoms, diagnosis and treatment options; an interactive quiz; and a video feature that illustrates the public's RLS I.Q.

About Restless Legs Syndrome
RLS is a neurological disorder that results in a powerful urge to move your legs (and, sometimes, other parts of your body).  RLS affects up to 23 million American adults; it is estimated that a third have moderate-to-severe RLS.  Symptoms tend to get worse in the evening and at night, and keep people from resting and relaxing, and may even affect sleep.  Daytime symptoms of RLS, such as inability to sit still and involuntary leg jerks, are increasingly recognized.vii viii

RLS can cause exhaustion and daytime fatigue, and may affect work and personal relationships.ix Patients with moderate-to-severe RLS are frequently impacted by their symptoms which can affect their daily activities.x These patients may require long-term treatment for their RLS symptoms.xi

About the Surveys
The general public survey was conducted by Kantar Health a global, evidence-based decision support partner to the world's leading pharmaceutical, biotech, device and diagnostic companies, on behalf of UCB, Inc. to better understand what knowledge gaps may exist regarding the burden of RLS.  Internet survey interviews among a projectable national sample of 1,000 respondents (18 years of age and older; who have awareness of, but have not been diagnosed with RLS; living in the continental US) were conducted between May and June, 2012. Quotas were set by age, gender, ethnicity to reflect the US Census Data. The margin of error for results based on the entire sample of 1,000 is plus or minus three percentage points. These respondents were drawn from the Lightspeed Research (a Kantar Group Company) General Population Panel, a nationally representative panel of consumers in the US.  

The RLS patient survey was also conducted by Kantar Health on behalf of UCB, Inc. to better understand the RLS patient experience and treatments for RLS and to uncover ways to improve doctor-patient conversations. Internet survey interviews among a projectable national sample of 335 patients diagnosed with RLS (156 who were identified as highly symptomatic) and currently taking prescription medication for the treatment of RLS (18 years of age and older; living in the continental US) were conducted between January and February, 2012.  The margin of error for results based on the entire sample of 335 is plus or minus five percentage points. These respondents were drawn from the 2011 US National Health and Wellness Survey, a nationally representative, self-administered survey conducted annually. Topics covered include the health status, attitudes, behaviors and outcomes among adults 18 or older. Kantar Health conducts NHWS annually in the US, Europe, Asia and Latin America. The National Health and Wellness Survey is the largest self-reported patient database in the healthcare industry.

About Neupro® in the U.S.
Neupro® (Rotigotine Transdermal System) is indicated for the treatment of moderate-to-severe primary Restless Legs Syndrome (RLS). For more information about Neupro visit neupro.com.

U.S. Important Safety Information for Neupro®
Neupro® contains a sulfite called sodium metabisulfite.  Sulfites can cause severe allergic reactions that are life threatening to some people who are sensitive to sulfites.  People with asthma are more sensitive to sulfites.  Remove the patch right away and call your doctor if you have swelling of the lips or tongue, chest pain, or trouble breathing or swallowing.

Neupro® may make you fall asleep suddenly or without warning while doing normal activities, such as driving, which may result in accidents.  Tell your doctor right away if this happens.  Drinking alcohol or taking other medicines that cause drowsiness may increase your chances of becoming sleepy while using Neupro®.  Do not drive, use hazardous machinery, or do other dangerous activities until you know how Neupro® affects you.

Neupro® can cause decreases in blood pressure, especially when you start or increase your dose.  Increases in blood pressure and heart rate, and fainting, also can occur.   If you faint or feel dizzy, nauseated, or sweaty when you stand up from sitting or lying down, tell your doctor.

Some patients using Neupro® get urges to behave in a way that is unusual for them, such as unusual urges to gamble or increased sexual urges and behaviors.  If you or your family notices you are developing any unusual behaviors, talk to your doctor.

Neupro® may cause Restless Legs Syndrome symptoms to come back (rebound), become worse, or start earlier in the day.

Skin reactions may occur at the site where you apply Neupro®.  Tell your doctor if you get a rash, redness, swelling, or itching that will not go away.

Avoid exposing the Neupro® patch you are wearing to heating pads, electric blankets, heat lamps, saunas, hot tubs, heated water beds, and direct sunlight.  Too much medicine could be absorbed into your body.  Also, do not wear Neupro® during procedures called magnetic resonance imaging (MRI) or cardioversion because this could cause skin burns.

Tell your doctor if you have breathing problems, a sleep disorder, mental problems, high or low blood pressure, or heart problems; are pregnant or plan to become pregnant; or are breastfeeding or plan to breastfeed.  Neupro® may not be right for you.

The most common side effects in people taking Neupro® for Restless Legs Syndrome are application site reactions, nausea, sleepiness, and headache.

Additional important safety information for Neupro® can be accessed at www.neupro.com/pi.

About UCB
UCB, Brussels, Belgium (www.ub.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With more than 8,500 people in about 40 countries, the company generated revenue of EUR 3.2 billion in 2011. UCB is listed on Euronext Brussels (symbol: UCB).

Further information
Andrea Levin, Associate Director, Communications & PR, UCB, Inc.
T +1.770.970.8352, [email protected]

i National Institute of Neurological Disorders and Stroke. "Restless Legs Syndrome Fact Sheet." http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm (Accessed: April 5, 2012) (Accessed: April 5, 2012)

ii National Institute of Neurological Disorders and Stroke. "Restless Legs Syndrome Fact Sheet." http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm (Accessed: April 5, 2012)

iii U.S. National Library of Medicine. "Restless Leg Syndrome." http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001810/ (Accessed: April 5, 2012)

iv Phillips, et al., 2006, p. 78, Col 1, ¶3; Stat Abstract, 2012, p. 11, Table 7—calculation: 9.7% with RLS (Phillips) X 234,564,000 adults in US (Stat Abstract) = 22,752,708

v Choose Your Move General Public Survey Data Set. 2012.

vi RLS Patient Survey Data Set. 2012.

vii Sethi KD. Restless Legs Syndrome sees the light of day. Lancet Neurology 2008;  7(7): 564-565

viii Earley CJ, Kuwabara H, Wong DF et al. The dopamine transporter is decreased in the striatum of subjects with restless legs syndrome. Sleep 2011; 34(3): 341-7

ix National Institute of Neurological Disorders and Stroke. "Restless Legs Syndrome Fact Sheet." http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm (Accessed: April 5, 2012)

x National Institute of Neurological Disorders and Stroke. "Restless Legs Syndrome Fact Sheet." http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm (Accessed: April 5, 2012)

xi Trenkwalder C, Paulus W, Walters AS. The restless legs syndrome. Lancet Neurol 2005; 4: 465

SOURCE UCB

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