Research

SUMMARY OF THE STATE OF EPILEPSY RESEARCH

To assess the state of epilepsy research, we examined progress toward a cure across three areas: financial capital, research focus, and human capital and scientific collaboration. Our analyses have uncovered some concerning facts: (1) epilepsy research is significantly underfunded, (2) over three quarters of epilepsy research is focused on improving symptoms versus uncovering the underlying mechanisms of the disease, and (3) epilepsy researchers are declining in number and are less collaborative than researchers in other neurological disorders. From these observations, we believe a few imperatives become clear. At a minimum, funding of epilepsy research must increase. Additionally, given the poor understanding of mechanisms, we, as a community, must focus more on basic discovery research. Finally, to give ourselves the best chance at a cure, we must go out of our way to demand and facilitate collaboration among researchers.

EPILEPSY RESEARCH IS IN NEED OF MORE FUNDING

In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations. Pharmaceutical investment in epilepsy is less than in Alzheimer’s and Parkinson’s, and given the lack of early stage clinical programs, it is projected to decline further over the next several years. The government invests
 $140–160 million in epilepsy research, but per patient contributes less to epilepsy than it does to other major neurological disorders. Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson’s, by contrast, receives $40–50 per patient from nonprofits. All told, epilepsy receives less total funding per patient than Alzheimer’s, Parkinson’s, and autism (Exhibit 1). Per researcher, funding for epilepsy lags average funding for all diseases by nearly 50%. It is hard to imagine finding a cure (or cures) for epilepsy will be feasible without a significant increase in funding across all three sources. In particular, much can be done to drive an increase in contributions to epilepsy organizations for research, where the gap is most significant relative to other neurological disorders.

RESEARCH ON UNDERLYING MECHANISMS IS NEEDED

Our research efforts should be re-balanced to focus more on the underlying mechanisms of epilepsy. Today, we focus 75–80% of our research on better controlling outcomes, such as seizure frequency and severity (Exhibit 2). Despite this allocation, only incremental improvements have been made to marketed anticonvulsants in the last ten years, with 40% of patients refractory to treatment and up to 60,000 deaths occurring annually due to seizure-related causes. The mechanisms of epilepsy are clearly not well understood. An increased focus on basic discovery—today only 20–25% of lack of research—is required if we hope to someday find a true cure. Increasing epilepsy research investments from government and private foundations—the largest funders of underlying mechanism research today—is the best way to achieve this goal.

GREATER SCIENTIFIC COLLABORATION IS REQUIRED

Leading researchers across institutions consistently claim that lack of collaboration among researchers is the number one obstacle to finding a cure for epilepsy. We compared collaboration among epilepsy researchers—as measured by co-authorship of research studies—to collaboration in other severe neurological disorders. Our findings confirmed that epilepsy researchers collaborate less than those researching Parkinson’s and Alzheimer’s (Exhibits 3, 4).
Often the greatest insights are made when researchers from different institutions or disciplines work together. Research funders can drive collaboration through grant criteria that require active engagement from multiple institutions or disciplines, and by creating forums for sharing positive and negative data, specimen repositories, and research discussion roundtables.


It is the recognition of both the successes and shortcomings described in this report that will allow us as a community to accelerate progress toward a cure.

See more at: CURE: 2010 State of Epilepsy Report