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Landmark National Survey Seeks To Shed Light On Impact Of Rare Seizure Pattern In Epilepsy

2014-09-04 09:00 ET - News Release

Upsher-Smith Provides Funding to the Epilepsy Foundation to Commission Survey About Seizure Clusters, to be Conducted by Harris Poll®

MAPLE GROVE, Minn., Sept. 4, 2014 /PRNewswire/ -- A new landmark U.S. seizure disorder survey is being commissioned by the Epilepsy Foundation (EF) to shed light on the burden of illness associated with seizure clusters, a rare seizure pattern experienced by some people with epilepsy.  The national Seizure Cluster Burden of Illness survey, led by a steering committee of leaders in the field of epilepsy, will be conducted by Harris Poll® and funded by Upsher-Smith Laboratories, Inc

Upsher-Smith Laboratories, Inc.

Outcomes of the survey are expected to elevate awareness about the seizure cluster patient and caregiver experience, highlight the challenges that patients, caregivers and healthcare providers face when managing seizure clusters, and illuminate unmet needs in seizure cluster care.  Results are expected to be announced in conjunction with this year's annual meeting of the American Epilepsy Society, December 5-9, 2014, in Seattle, Washington.

"Seizure clusters greatly diminish patient and caregiver quality of life and functionality.  Their often-unpredictable nature limits the activities of daily living and prompts substantial anxiety, depression, and feelings of helplessness and isolation," said Janice Buelow, RN, PhD, FAAN, vice president, programs and research, Epilepsy Foundation.  "We are very grateful to be a part of this survey as it will bring attention to the challenges of managing seizure clusters and hopefully be the impetus for heightened levels of care."

"Approximately 150,000 refractory epilepsy patients in the United States suffer from intermittent bouts of increased seizure activity, or seizure clusters.  Seizure clusters are periods of exacerbated seizure activity that can last minutes, hours, or days and are distinctly different from the patient's usual seizure patterns - these are considered seizure emergencies," said Joseph Sirven, MD, chairman, Department of Neurology, Mayo Clinic.  "While emotionally and physically debilitating for many patients and caregivers, seizure clusters are not well characterized or understood, and approaches to diagnosis, treatment, and monitoring vary widely.  We are excited to work with the Epilepsy Foundation to shed light on this challenging condition and hope that the results of this survey will lead the way for the medical community to create a seizure cluster management and diagnosis protocol that will ultimately reduce the risk of morbidity and mortality."     

About Epilepsy
Epilepsy is a medical condition that is characterized by recurrent seizures.  More than two million people in the U.S. are estimated to be affected by epilepsy, with about 150,000 new cases of epilepsy diagnosed each year.1  Epilepsy can be associated with profound physical, psychological and social consequences that negatively impact people's lives.

About Seizure Clusters
Seizure clusters, also referred to as acute repetitive seizures or increased bouts of seizure activity, consist of multiple seizures which occur over a relatively brief period of time with a pattern distinguishable from the patient's usual seizure pattern.2  

Reports of seizure cluster prevalence vary, but it has been estimated that approximately 22% of the intractable epilepsy population (approximately 152,000 people) experience them. 3,4,5,6  

Seizure Cluster Burden of Illness Survey Steering Committee
The Seizure ClusterBurden of Illness survey development was led by a steering committee comprised of renowned leaders in the field of epilepsy including:  Janice Buelow, RN, PhD, FAAN, vice president, programs and research, Epilepsy Foundation; Patricia Penovich, MD, Minnesota Epilepsy Group; Joseph Sirven, MD, chairman, Department of Neurology, Mayo Clinic; and James Wheless, MD, professor and chair, Department of Pediatric Neurology, University of Tennessee.

About the Epilepsy Foundation
The Epilepsy Foundation, a national non-profit with 48 affiliated organizations throughout the United States, has led the fight against seizures since 1968.  The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures.  The mission of the Epilepsy Foundation is to stop seizures and sudden unexpected death in epilepsy (SUDEP), find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.  The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential.  For additional information, please visit www.epilepsy.com.

About Nielsen & The Harris Poll
On February 3, 2014, Nielsen acquired Harris Interactive and The Harris Poll.  Nielsen Holdings N.V. (NYSE: NLSN) is a global information and measurement company with leading market positions in marketing and consumer information, television and other media measurement, online intelligence and mobile measurement.  Nielsen has a presence in approximately 100 countries, with headquarters in New York, USA and Diemen, the Netherlands.  For more information, visit www.nielsen.com.

About Upsher-Smith
Upsher-Smith Laboratories, Inc., founded in 1919, is a growing pharmaceutical company dedicated to its mission of Advancing Pharmacotherapy. Improving Life.  With capabilities ranging from early-stage research to delivering on-market products, Upsher-Smith is committed to offering quality products that enable people to live life to its greatest potential.  Upsher-Smith's approach to product development and partnering has resulted in a broad range of both branded and generic therapeutic solutions to address patients' needs.  The Company has a particular focus on developing therapies for people living with central nervous system (CNS) conditions, such as seizure disorders, and has a robust pipeline of promising CNS compounds in various stages of development.  For more information, visit www.upsher-smith.com.

References

1.     Epilepsy.com. Available at: http://www.epilepsy.com/learn/epilepsy-statistics.  Accessed April 16, 2014.
2.     Dreifuss FE, Rosman NP, Cloyd JC, et al. A comparison of rectal diazepam gel and placebo for acute repetitive seizures. N Engl J Med. 1998;338:1869-75.
3.     Kobau R, Zahran H, Thurman DJ, et al. Epilepsy Surveillance Among Adults – 19 States, Behavioral Risk Factor Surveillance System, 2005.  MMWR.  2008;57:SS-6.
4.     Kwan P, Brodie MJ. Early Identification of Refractory Epilepsy. N Engl J Med. 2000;342:314-319.
5.     Berg AT, Vickrey BG, Testa FM, et al. How long does it take for epilepsy to become intractable? A prospective investigation. Annals of Neurology. 2006;60:73-79.
6.     Haut SR, Lipton RB, LeValley AJ, et al. Identifying seizure clusters in patients with epilepsy. Neurology. 2005 October 25;65(8):1313-1315.

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