Earlier this year, we conducted a community survey where we asked you – the pediatric epilepsy surgery community – what you want us to do:
59% of you responded that you want us to increase funding of research to improve our understanding of how to improve functional outcomes after surgery (e.g. improving hand function after hemispherectomy)
42% want us to increase funding of research to improve our understanding of medical outcomes after surgery (e.g. hydrocephalus after hemispherectomy)
One way we can work together to increase funding around pediatric epilepsy surgery research is the Epilepsy Research Benchmarks – a framework for essential epilepsy research developed by the National Institute of Neurological Disorders and Stroke and the American Epilepsy Society.
Among other things, these benchmarks guide federal and non-profit funding priorities for the next 5 – 7 years. The benchmarks will be presented to the research community at the fourth Curing the Epilepsies conference scheduled for January 4 – 6, 2021.
This short video explains the benchmarks and their importance in epilepsy research:
Understanding the Benchmarks
Organized by “areas”, the benchmarks capture the specific areas of epilepsy research focus for the next several years. (Because the benchmarks are written for researchers and clinicians, you may prefer to read the plain language summary of the benchmarks found here.)
Each section below includes an explainer video prepared by the Epilepsy Leadership Council to help you understand the benchmark areas.
Providing Your Input
Now that the new benchmarks have been drafted, it’s time for the patient community to provide input. The National Institute of Neurological Disorders and Stroke welcomes your ideas and comments, and will make changes to the benchmarks based on public comments as appropriate. The crowdsourcing platform IDEASCALE is used to collect public comments through this online campaign.
Watch this short video to understand why it’s important for the research community to hear from you:
How To Participate
Tips for providing comments
- Don’t be intimidated! Your child’s epilepsy surgery journey matters. Tell your story as it relates to one of the benchmark areas.
- Comment in your own voice. You don’t need to use medical terminology. Authentic comments are welcome and needed.
- Be genuine. What’s missing from the benchmarks? Is there an area that should be rewritten?
Two of the benchmark areas include epilepsy surgery. We encourage you to comment about these benchmarks and engage in discussions with other commenters about the importance of the benchmark to your family and our community.
Area III …. 4. Identify, develop, and improve pharmacological, surgical, genetic, epigenetic, neuromodulatory, dietary interventions and devices to detect, predict, or terminate seizures and other epilepsy-related health risks while minimizing adverse effects.
Area IV ….. 2. Understand and limit the impact of anti-seizure treatments (medical, surgical, and other interventions) on non-seizure outcomes, such as neurodevelopment, mental health, cognition, health-related quality of life, and other functions.
Last year, we held a research meeting where we discussed the massive gaps in functional outcomes research after large pediatric epilepsy surgeries. At the end of the meeting, we decided there were three main research areas that needed to be addressed:
- Understanding postoperative hydrocephalus;
- Understanding post-surgical mental health issues; and,
- Understanding and improving literacy after surgery and other educational interventions.
We encourage to comment about the benchmarks and the research areas above. For example, if your child experienced hydrocephalus after hemispherectomy, you might write about your the diagnostic journey to hydrocephalus, success or failure of treatments, and how hydrocephalus has impacted your child, and encourage more research funding in this area.
If your child has experienced mental health issues after surgery, share your story in support of the benchmarks to encourage more funding in that area.
You can also suggest that the benchmark be rewritten. For example, should the benchmark be clarified to list educational outcomes? Why is that important to you?
Do you need help?
- The DEE-P Initiative has a detailed, one-hour video about the benchmarks and how to comment here. We encourage you to watch the whole video to take a “deep dive” and understand the benchmarks and the importance of your comments. Specific instructions on how to use the crowdsourcing platform and comment on the benchmarks starts at minute 20:00.
- Our advocacy partners at the Dravet Syndrome Foundation have prepared helpful instructions on how to join the crowdsourcing platform and provide comments here;
- Feel free to set up a time for us to walk you through the process and provide you with any assistance you might need to provide comments. You can schedule a time here: https://calendly.com/thebrp/30min.
The National Institutes of Neurological Disorders and Stroke has launched a second campaign to collect input around transformative ideas around epilepsy research. We’ll publish a blog post soon about how you can advocate for big change by providing your transformative ideas.
It has been a tremendous honor for us to work alongside other Epilepsy Leadership Council members on behalf of the entire membership to bring the patient voice to these benchmarks. Now, it’s time for our community’s voice to be heard. If we want to move pediatric epilepsy surgery research forward to answer all the questions we have about our children, this is a powerful way to do it.