Epilepsy, a common and serious neurologic disorder that affects millions of people, is not getting the public attention and funding for research it deserves, according to an editorial on a study published in the January 4, 2011, print issue of Neurology®, the medical journal of the American Academy of Neurology.
"We have almost nonexistent epilepsy surveillance, or ongoing collection of data on newly diagnosed epilepsy, in the United States," said Edwin Trevathan, MD, MPH, Dean of the St. Louis University School of Public Health in St. Louis and a member of the Neurology® Editorial Board. "As a result, we do not have good data to inform decisions made by our health leaders, and some of our best researchers are analyzing data that are 30 to 50 years old."
Trevathan points to narrowly focused funding lines from Congress to the Centers for Disease Control and Prevention (CDC) as one cause of inadequate epilepsy data. For example, these narrow funding lines result in funding for public awareness campaigns instead of essential public health infrastructure, such as public health surveillance for epilepsy. Major federal agencies such as the CDC also have other priorities that receive the limited, optional funding.
"Epilepsy has a major impact on public health. A national approach to monitoring epilepsy trends is desperately needed in order to monitor the impact of improvements in epilepsy care, to identify problems with epilepsy care that need to be corrected, and to provide up-to-date data for researchers," said Trevathan.
In the corresponding study, scientists aimed to discover the lifetime risk of developing epilepsy. They analyzed data on 412 people from Rochester, Minn., diagnosed with epilepsy between 1960 and 1979. The study found that at least one in 26 people will develop epilepsy in their lifetime. The risk was higher in the elderly, with a risk of 1.6 percent in people under age 50 and a 3.0 percent risk for people up to age 80.
"Our results highlight the need for more research using epilepsy surveillance data, especially given the aging population in the United States. Such surveillance will also provide useful information for health care planners as they address the service needs of people with epilepsy," said study author Dale C. Hesdorffer, PhD, associate professor of clinical epidemiology in the Sergievsky Center at Columbia University Medical Center.
The study was supported by the National Institute for Neurologic Disorders and Stroke and the National Institutes of Health.
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