State of Epilepsy Report
LETTER FROM THE CHAIR
As Chair of CURE and a member of the
epilepsy community, I am at once
dismayed and hopeful as we publish our
first annual State of Epilepsy Research
Report. In the pages that follow, you will
find our first attempt to assess our
community’s collective progress toward a
cure for epilepsy.
I am dismayed because as I read through
this report, the enormous challenges we
face in advancing this field crystallize. The
data confirms that funds for epilepsy
research—from government, industry, and
private sources—are totally insufficient
given the magnitude of the problem and
the status of our progress in the field. We
know now that the vast majority of funding
goes to incremental improvements in anticonvulsant
medications (which are largely
ineffective for about 40% of patients) rather
than to uncovering underlying mechanisms
that may lead to cures. We also know that
the number of basic researchers in
epilepsy is declining and that those
involved have been less collaborative than
their colleagues in other neurological
But, we also have great reason for hope.
While our challenges are significant, I have
every confidence that, as a community, we
have the will and determination it takes to
make meaningful progress toward
defeating this disease. We are finally
making strides in our efforts to
communicate well beyond our community
the critical importance and urgency of the
need. This gives me tremendous faith that
together we can turn the challenges
detailed in this report into opportunities to
make a real difference for our patients and
It is within our power to make this happen,
but we must act now. Lives are being
ravaged and lost every day that we delay. I
have tremendous hope that these reports
in coming years will tell the stories of great
progress toward our common goal—a
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
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
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.
GREATER SCIENTIFIC COLLABORATION IS REQUIRED
1. Research funding per patient
- Non-profit foundation funding. Sources: Foundation Directory Online (http://fconline.foundationcenter.org), Foundation Center,
2009; and individual foundation financial statements from 2007 and 2008. Methodology: used foundation contributions to research;
applied ranges to account for assumptions.
- Government funding. Sources: Research Portfolio Online Reporting Tool (http://report.nih.gov/rcdc/categories), National Institutes of
Health, 2009. Methodology: Assumed total government funding is 5-10% higher than funding from NIH (e.g., Department of Defense).
- Pharmaceutical funding. Sources: Joseph A. DiMasi, Ph.D., Impact Report, Tufts University Center for the Study of Drug
Development, March 2007; Evaluate, 2008. Methodology: Assumed 40-50% of total R&D spending is attributed to development;
determined annual development cost by calculating average cost per year, per phase of development, multiplied by the number of
compounds currently in each development phase.
- Prevalence of neurological disorders in the United States, sources:
- Epilepsy. There is no definitive source. This report uses the Centers for Disease Control and Prevention which estimates prevalence at 2.5 million to 2.7 million. The National Institutes of Health estimates
prevalence at 3 million. The CDC also reported in a
2008 study that 1% of non-institutionalized adults in the U.S. have epilepsy. This report did not include those most severely
impacted, children, and those living in non-traditional homes.
- Morbidity and Mortality Weekly Report.
- Parkinson’s Disease. Estimate: 1.0 million. Parkinson’s 101; Michael J. Fox Foundation, 2009
- Alzheimer’s Disease. Estimate: 4.5 million. Alzheimer’s Disease Fact Sheet, National Institutes of Health,
- Autism. Estimate: 0.5 million. Autism Spectrum Disorders, National Institutes of Health, 2008.
2. Epilepsy research allocation
- Sources: Clinicaltrials.gov, 2008; Research Portfolio Online Reporting Tool, National Institutes of Health, Jan 2004-July 2009.
- Methodology: Selected a representative sample of clinical trials and NIH-funded research projects, calculated the weighted average for
research on managing outcomes, based on contribution of funding from each source.
3. Number of articles published in epilepsy
- Source: “Core Clinical Journals,” (PubMed, Jan 2004-Aug 2009).
- Methodology: Due to the high number of authors, we included only those who have published two or more articles in past 5 years.
4. Percent of epilepsies with unknown causes
- Source: Hauser, W. A., Annegers, J. F., Kurland, L. T. (1993). “Incidence of epilepsy and unprovoked seizures in Rochester,
Minnesota,” 1935-1984. Epilepsia, 34(3), 453-468.
5. Drug development
6. Research collaboration
- Source: Ibid, Endnote No. 3
- Methodology: Assumed co-authorship as proxy for collaboration. “Links” represent the number of co-authorships between researchers.
“Betweenness” measures how many researchers are connected through the same “middleman.” Researchers with high betweenness
scores have a greater opportunity to connect other researchers.
• Note: articles included references to epilepsy, but not related topics (e.g., tuberous sclerosis)
7. Prevalence of epilepsy
- Source: Ibid, Endnote No. 1
8. Incidences of epilepsy
- Sources: Sander, J.W., “The Epidemiology of Epilepsy Revisited,” Department of Clinical and Experimental Epilepsy, Institute of
Neurology, University College London, Current Opinion in Neurology, 2003 (Pubmed);
“Targeting epilepsy: Improving the Lives of People with One of the Nation’s Most Common Neurological Conditions,” Centers for
Disease Control and Prevention, 2009; U.S. population - U.S. Census
9. Mortality from epilepsy
- Sources: Tomson, T., “Mortality in Epilepsy,” Department of Clinical Neuroscience, Karolinska Institute, Karolinska Hospital, Stockholm,
Sweden, Journal of Neurology, 2000 (Pubmed); U.S. Mortality rates –
National Vital Statistics Reports, Deaths: Final Data for 2006, Centers for Disease
Control and Prevention, 2006.
- Methodology: Assumed mortality for patients with epilepsy two to three times higher than the average U.S. population
10. Refractory to at least one anti-convulsant
- Sources: Therapeutic Category Outlook, S.G. Cowen & Co., Sept. 2008; “Early Identification of Refractory Epilepsy,” Kwan, P. and
Brodie, M.J., University Department of Medicine and Therapeutics, Western Infirmary, Glasgow, Scotland, New England Journal of
Medicine, Feb. 2000 (Pubmed).
11. Intractable to all anti-convulsants
- Source: Therapeutic Category Outlook, S.G. Cowen & Co., Sept 2008.
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