Global Epilepsy Research Funding Grossly Inadequate

Editor's Choice
Main Category: Epilepsy
Also Included In: Neurology / Neuroscience
Article Date: 29 Dec 2010 - 11:00 PDT

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Epilepsy, although it is prevalent in millions of humankind does not get enough funding for research and treatment development. There are many different types of seizures that can affect people in different ways. While seizures can be easy to diagnose and control for some people, for many others, epilepsy is a lifelong problem that can affect people in many different ways. In these cases, the solution starts with knowledge. However current data is outdated and potentially irrelevant. There are about 50 million people with epilepsy worldwide, who all need a chance to live a life without seizures.

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 reports:

"We have almost nonexistent epilepsy surveillance or ongoing collection of data on newly diagnosed epilepsy, in the United States. 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."

According to The Congress to the Centers for Disease Control and Prevention (CDC), there are other priorities that warrant grant funding for such data mining, and as of late, the CDC has neglected this severe condition as a focal point of research. Limited funding results in public awareness campaigns instead of essential public health infrastructure, such as public health surveillance for epilepsy.

Trevathan continues:

"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."

A study that dates back to an analysis of data based on 412 epileptic patients diagnosed with epilepsy between 1960 and 1979 in the state of Minnesota 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% in people under age 50 and a 3% risk for people up to age 80.

Dale C. Hesdorffer, PhD, associate professor of clinical epidemiology in the Sergievsky Center at Columbia University Medical Center in a study that was supported by the National Institute for Neurologic Disorders and Stroke and the National Institutes of Health summarizes:

"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."

Current treatments for epilepsy are inadequate as well. Far too many people do not have their seizures controlled. In the United Kingdom for example, 30% of people with epilepsy cannot become seizure-free with current treatments. Many anti-epileptic drugs currently available significantly, affect patients' quality of life due to their side effects. Recent new treatment methods such as vagus nerve stimulation and new surgical techniques are helping, but there is still a long way to go yet in optimizing treatment for people with epilepsy.

The underlying causes of epilepsy are also still largely a mystery. There is no understanding as to why some people are born with a disposition towards epilepsy and others not. How a seizure starts in the first place, or what makes them spread is also an unknown. Finding more information about these phenomena may allow us to find new ways to tackle seizures, by developing new treatments. The only way to find new treatments is through research.

Scientific research is a very expensive business. It is slow and painstaking. Epilepsy Research UK often provides start-up funds for pilot projects, lasting 1-3 years that allows researchers to test a new theory. If the work is promising, the researchers then have good data to approach the major funding bodies for more substantial grants.

Although the findings in these summaries hold much promise for reducing the burden of the epilepsies, many research needs remain unmet. In particular, biomarkers and new and improved animal models are needed to aid the search for strategies to prevent epilepsy and to treat epilepsies that remain intractable to currently available interventions.

The American Academy of Neurology, an association of more than 22,500 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, brain injury, Parkinson's disease and epilepsy. For more information about the American Academy of Neurology, visit http://www.aan.com.

Written by Sy Kraft, B.A.
Copyright: Medical News Today
Not to be reproduced without permission of Medical News Today

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