LANDMARK NATIONAL SURVEY SEEKS TO SHED LIGHT ON IMPACT OF RARE SEIZURE PATTERN IN EPILEPSY
Upsher-Smith Provides Funding to the Epilepsy Foundation to Commission Survey About Seizure Clusters, to be Conducted by Harris Poll®
Maple Grove, MN – September 4, 2014 – 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 Illnesssurvey, 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.
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.”