ICARE Epilepsy Research Portfolio Analysis – 2013 data
The first ICARE-wide research portfolio analysis was presented at the 2015 ICARE meeting. This initial analysis, carried out by a working group of ICARE member volunteers, included over 500 projects from 11 ICARE member organizations resulting in a total portfolio of $149M.
2014 NINDS Benchmarks for Epilepsy Research
On April 17-19, 2013, NINDS hosted Curing the Epilepsies 2013: Pathways Forward, the third in a series of Curing the Epilepsies conferences held in partnership with epilepsy advocacy and professional organizations to assess progress in epilepsy research and help set an agenda for future years. As an important outcome, these conferences have led to the development of Benchmarks for Epilepsy Research, which reflect priorities shared across the epilepsy community for research toward clinically meaningful advances in understanding and treating the epilepsies. Read more »
- 2014 Benchmarks with introductory preamble (PDF, 320KB)
In these 2016 reports research progress made since 2013 is summarized :
- 2014 Epilepsy Benchmarks: Progress and Opportunities
- 2014 Epilepsy Benchmarks Area I: Understanding the Causes of the Epilepsies
- 2014 Epilepsy Benchmarks Area II: Prevent Epilepsy and Its Progression
- 2014 Epilepsy Benchmarks Area III: Improve Treatment Options
- 2014 Epilepsy Benchmarks Area IV: Limit or Prevent Adverse Consequence Across The Lifespan
In these 2020 reports research progress made since 2016 is summarized:
- 2020 Editorial: The Benchmarks: Progress and Emerging Priorities in Epilepsy Research
- Epilepsy Benchmarks Area I: Understanding the Causes of the Epilepsies and Epilepsy-Related Neurologic, Psychiatric, and Somatic Conditions
- Epilepsy Benchmarks Area II: Prevent Epilepsy and Its Progression
- Epilepsy Benchmarks Area III: Improved Treatment Options for Controlling Seizures and Epilepsy-Related Conditions Without Side Effects
- Epilepsy Benchmarks Area IV: Limit or Prevent Adverse Consequence of Seizures and Their Treatment Across the Life Span
Curing the Epilepsies: The Promise of Research, (NINDS, September 2013)
For individuals living with a treatment-resistant form of the seizure disorders known as “the epilepsies,” each day can bring debilitating seizures as well as challenges from co-occurring conditions that dramatically impair quality of life. This brochure, for people with the disorders, their caregivers, and advocates, outlines the state of progress made in the past decade toward achieving the Epilepsy Research Benchmarks, a set of widely recognized objectives aimed at prioritizing the efforts of scientists and health care providers to find cures for the epilepsies. Read more »
- Brochure, Epilepsies and Seizures: Hope Through Research (PDF, 2.46MB)
Epilepsy across the Spectrum: Promoting Health and Understanding, (IOM, March 2012)
The Institute of Medicine (IOM) was asked by 24 sponsoring federal agencies and nonprofit organizations to examine the public health dimensions of the epilepsies. In its report, Epilepsy Across the Spectrum: Promoting Health and Understanding, recommendations are made to improve the lives of people with epilepsy and promoting better understanding of the disorder. Read more »