NINDS Public Crowdsourcing Community 2020 Epilepsy Research Benchmarks

Benchmark 4 – Limit or prevent adverse consequences of seizures and their treatment across the lifespan.

• Research the relationship between sleep and seizures

• Explore prevalence of different multi-dien seizure cycles. Explore how seizure cycles impact expression of comorbidities.

• Assess the true incidence of epilepsy mortality including SUDEP. – Develop better surveillance tools and methods so that risk factors... more »

Epilepsy patients' research data are typically collected and stored in standalone de-identified database silos, making it impossible to merge or compare data across disparate research studies or give feedback to the patient. A patient-generated clinical research ID (CRID) could be used to merge and share data across different research studies for the same patient without revealing PHI/PII data. CRID enables a secure two-way... more »

We need a better protocols for tailoring anti-seizure medication (ASM) regimes or surgical treatment options for our children, especially the early-onset, drug-resistant epilepsies (DRE) within the DEE families - one that acts with urgency to define the best treatment available in an individualized plan based on the knowledge of the diagnosis, the types of seizures, and the values of the child and family. Yes, please... more »

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 »

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 »

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 »

Benchmark 2 – Prevent epilepsy and its progression.

• Grand Challenge idea: "Biomarkers for Prevention before Seizure Onset" – Following the example of TSC and vigabatrin, a grand challenge may be to identify the range of other epilepsies that can be accurately identified before seizures emerge, and develop targeted programs to develop biomarkers and preventive treatments. Examples could include individuals with higher... 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 »

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?

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 »