What is the difference between the Benchmarks and the Transformative Research Priorities?

What is the difference between the Benchmarks and the Transformative Research Priorities?

Epilepsy Research Benchmarks (open until October 30, 2020)

What are benchmarks?

The Epilepsy Research Benchmarks are a shared community vision for the research needed to expand our understanding of epilepsy and how it is treated, contributing to meaningful advances in health outcomes for people with epilepsy. The Benchmarks are divided into 4 areas:

  1. Understand what causes the many types of the epilepsies and commonly co-occurring symptoms
  2. Prevent epilepsy and its progression
  3. Improve treatment options for controlling seizures and epilepsy-related conditions while limiting side effects
  4. Limit, treat, or prevent other conditions associated with epilepsy including neurodevelopmental and mental health issues, cognitive problems, health-related quality of life concerns, as well as causes of mortality or death
Why are they important?

The epilepsy research community uses the benchmarks as a framework to focus research and benchmark progress over 5 to 7 years. Since the first Benchmarks were put forward following the first Curing Epilepsy Conference in 2000, they have helped to draw attention on new or evolving research goals such as addressing the prevention of epilepsy or the non-seizure components of epilepsy. All research grants in the United States are coded to the Benchmarks in the ICARE database, helping to track research activity across these different areas.

What can I do?

People with epilepsy, their families, and caregivers are encouraged to weigh in on the research areas. Read the revised epilepsy research benchmarks. Then log into the NINDS Crowdsourcing Platform and see what researchers, clinicians, and people with epilepsy are saying. Do you agree with the new Benchmarks? What is missing from them? Submit your own idea, give kudos (“like”) a posted idea, or comment on a posted idea.  People with epilepsy can also email comments to: CuringEpilepsies2020@ninds.nih.gov

Transformational Priorities in Epilepsy Research (Open September 22  - October 30, 2020)

What are transformational priorities?

A new charge of the AES Epilepsy Research Benchmarks Committee is to identify paradigm-shifting, transformative research priorities where dedicated effort could accelerate the science to benefit individuals with epilepsy. These are ideas to:

  • Fundamentally improve our understanding of the epilepsies and the lives of people with epilepsy, or;
  • Stimulate novel and innovative research to address challenges and open questions in the field, or;
  • Encourage multi-disciplinary approaches and attract new thinking to research on the epilepsies, or;
  • Identify specific areas of research that, if successfully undertaken, present opportunities for transformation in the understanding and treatment of epilepsy.
Why is it important to comment?

Transformative Research Priorities should be developed with input from all people who understand and care about the epilepsies. The voices of individuals with epilepsy and their families and caregivers who live with epilepsy is essential to understand where progress is needed.

What can I do?

Log into the NINDS Crowdsourcing Platform and share your ideas on how research can change the lives of people with epilepsy. You can also follow the conversation and read what researchers, clinicians, and people with epilepsy are saying about the priorities. Submit your own idea, give kudos (“like”) a posted idea, or comment on a posted idea.  People with epilepsy can also email comments to: CuringEpilepsies2020@ninds.nih.gov