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As the current Covid-19 pandemic has made in person visits difficult or impossible, colleagues in academic and other settings have been managing neurology clinical research subjects and patients using telehealth platforms. Teleheath may have an important role in monitoring epilepsy clinical research subjects, and may be particularly helpful for following established research subjects/patients and may permit ongoing clinical... more »

One third of late-onset epilepsy have no known etiology. Cognitive symptoms are common with LOE and a third of these patients have mild cognitive impairment. Some patients with LOE have transient epileptic amnesia (TEA), while others develop neurodegenerative diseases such as Alzheimer's disease or dementia with Lewy bodies. Autoimmune causes have variable clinical presentations.

Incorporate findings from the NINDS workshop entitled, "Metabolism-based Therapies for Epilepsy" (Nov 9. 2020)

The current benchmarks never say the words "cure epilepsy". It is vaguely suggested by Area II, component E, but why be vague? We want to CURE EPILEPSY. Lets say that loud and clear, right?

Coming from the world of families with children ravaged by the many rare and catastrophic epilepsies, we suggest consideration of a benchmark where every child with epilepsy is enrolled in a clinical trial. Our children are already guinea pigs, but their experiences are not treated with the respect of a common lab rat. The vital data on the impact of the constantly changing cocktails to try to control their treatment... more »

Epilepsy is a disease of multi-layered networks including electrical networks that we record on surface and intracranial EEG down to synaptic networks; spatial networks seen with advanced imaging and the presence or absence of developmental or acquired lesions; and the underlying cellular, genetic, and metabolic network. I would argue a research priority to develop ways to understand these individual networks as well... more »

Incorporate ethics approaches and use human values to guide innovation in research and technology for drug resistant epilepsy (DRE).

Area IV:A In this section, there is no mention of treatment for mental health disorders. The language does indicate "understand and limit the impact of epilepsy" on mental health outcomes and then in D "identify causes and risks for epilepsy related mortality" due to mental health conditions. But, this does not appear to account for non-pharmacological interventions in the treatment of mental health disorders. There is... more »

Brain organoids, a new class of brain surrogate, have gained traction as a model for studying the intricacies of the human brain by using advancements in stem cell biology to recapitulate aspects of the developing human brain in vitro. Brain organoids generated from human pluripotent stem cells (hPSCs) offer a means to study human disease. Recent observation of nested EEG-like signals spontaneously emerge from these organoids... more »

Few benchmarks will have large clinical impact if accomplished alone. Most benchmarks, specifically those relating to integrating large data sets and developing models, depend upon integrating knowledge gained from progress toward other benchmarks. In Area II, for example, benchmarks A, B, and C could be addressed separately, by a variety of innovative research approaches large and small. However, benchmark F needs input... more »

Metabolic and biochemical pathways are an understudied research area in the epilepsies. Biochemical pathways provide crucial links between gene expression (e.g. via epigenetic modification), energy metabolism (mitochondria, ATP), neuron-glia interactions, and finally neuronal excitability. Derailment of metabolic functions can affect a complex system such as the brain on multiple different levels and metabolism or biochemistry... more »

For many genetic epilepsies the pathomechanisms are not known making rapid identification of novel drug targets challenging. Identifying genetic modifiers of high-risk epilepsy alleles using a variety of approaches (CRISPR screens, leveraging natural genetic diversity in model organisms, human modifier studies using large patient repositories) may inform key genes involved in disease mechanisms and could illuminate drug... more »

There is a huge gap in this research area that pertains to Hispanic/Latinx patients with TLE and other epilepsy syndromes. Specifically, very little is known of whether Spanish-speaking patients with epilepsy have similar cognitive trajectories and post-operative cognitive outcome to other racial/ethnic groups. One of the limitations of conducting neuropsychological research with Spanish-speaking patients is the lack... more »

Most epilepsy-related Machine Learning (ML) tools tend to focus on seizure detection using readily available EEG "training" datasets. ML has potentially many other epilepsy-related use cases beyond seizure detection that are yet to be discovered, but the lack of "training" data is likely hindering its use. If tools could be developed to help identify and generate new "training" data from existing epilepsy datasets, ML... more »

More substantive research priorities, however well framed and targeted, can not alone overcome the inefficiencies and silo-ed structure for clinical care and research in the epilepsies.

By integrating clinical care and research—the standard for decades in pediatric oncology—we will get on a path where we will start seeing improvements in the quality of life for all those living with and too often dying from epilepsy.... more »