Twenty years ago, in March 2000, the National Institute of Neurological Disorders and Stroke (NINDS) along with the American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE), the Epilepsy Foundation, and the National Association of Epilepsy Research Centers co-sponsored a White House initiated conference, Curing Epilepsy: Focus on the Future. One of the initiatives to come out of the conference was the development of a set of benchmarks that would set research priorities and measure progress over subsequent years. These benchmarks allow the opportunity for all stakeholders in the epilepsy community to communicate and address research priorities. These benchmarks give the entire epilepsy community – including the National Institutes of Health (NIH), researchers, healthcare professionals, advocacy organizations, and patients – a framework for checking in on the progress that has been made in each of these priority areas.
Since the initial meeting, an ongoing series of conferences has taken place to reassess the state of research on the epilepsies, as well as to revisit and update the Epilepsy Research Benchmarks. The second conference took place in 2007 (Curing Epilepsy: Translating Discoveries into Therapies); the third in 2013 (Curing the Epilepsies: Pathways Forward); and the fourth (Curing the Epilepsies: Setting Research Priorities) will take place as a virtual event on January 4-6, 2021.
So why is this important for the patient community to understand? Because the benchmarks must include the patient voice. Patient community members need to offer feedback on what is most important to us if we want research to focus on our concerns. NINDS has launched a campaign to collect feedback, comments, and ideas from the epilepsy community on the new proposed 2020 Epilepsy Research Benchmarks.
How can you participate?
- Go to the 2020 Epilepsy Research Benchmarks page to read about this initiative.
- Watch the Campaign Brief video to learn about the origin and progress of this project, as well as how you can lend your voice to the first part of this two-part campaign.
- Click the Let’s Get Started Link, at the bottom of the page. You will be required to set up an account to comment or submit a new idea. Step-by-step instructions can be found at this link.
- You don’t have to be a doctor or researcher to share your feedback. In fact, the researchers want to hear your stories and personal challenges. What are your frustrations in epilepsy treatment and care that research could solve? Don’t worry about writing it in science speak – the best ideas will come forward when you describe your experiences and the research community thinks about how to make changes to address those concerns. On the Campaign Page, you can read others suggestions; comment on these suggestions; or submit a new idea. Come back often to comment and show support for ideas you like!
- Stay tuned for how you can participate in the second part of this campaign, which will launch on September 22nd and will invite feedback on huge transformative ideas to change the course of epilepsy for you and our families. What big changes in epilepsy would make a difference in your life day to day? Both parts of the campaign will remain open through October 30th.
To learn more about the progress in epilepsy research and the Epilepsy Research Benchmarks process, register to join our friends at DEE-P Connections, along with the Epilepsy Leadership Council (ELC) and the Rare Epilepsy Network, for a webinar on Monday, September 14, 2020 at 3:00 pm EST. You can also hear why your participation is so important from the co-chairs of the ELC’s Patient Advocacy Benchmarks Workgroup at this link.
Your participation will guide the benchmark priorities and assure that we yield exciting advances in future research. Please lend your voice to this important initiative. If you have any difficulties in submitting your comments or suggestions, please email our Research Coordinator, Dr. Veronica Hood. She is available to walk you through the process.