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2020 Epilepsy Research Benchmarks

Better Seizure Prediction and Prevention

Patients need biomarkers and/or technological devices to better predict and accurately detect seizure activity. Studies in animal models and in patients to search for predictive biomarkers of seizures and/or biomarkers that may predict risk of SUDEP are urgently needed. Devices that are more convenient and more accurate for patients of all ages to utilize for seizure detection and SUDEP prevention need to be developed... more »

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2020 Epilepsy Research Benchmarks

Understanding the Genotype-Phenotype Relationship

Understanding the Genotype-Phenotype Relationship (Relevant to areas: 1A, 2A, 2F, 3C)

Our understanding of the major genes associated with causal-mutations in the genetic epilepsies has vastly increased in the last two decades, there is still so much that is poorly understood about how genotypes correspond to phenotypic outcomes amongst patients with similar causal mutations. Researchers have begun to investigate the... more »

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2020 Epilepsy Research Benchmarks

Benchmark Area IV

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 »

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2020 Epilepsy Research Benchmarks

Benchmark Area III

Benchmark 3 – Improve treatment options for controlling seizures and epilepsy-related conditions without side effects.

• For new genes/pathways that have been figured out for monogenetic conditions, promote or support gene modifying solutions.

• Understand how dysfunctional networks allow propagation of seizures

• Explore how intervention in a network rather than on a seizure focus could eliminate seizures or improve... more »

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2020 Epilepsy Research Benchmarks

Benchmark Area II

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 »

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2020 Epilepsy Research Benchmarks

Untitled Idea

• We suggest the epilepsy field make concerted efforts to specifically apply BRAIN Initiative discoveries towards the epilepsies.

• Grand Challenge idea: Precision diagnosis – right now there are a large number of people with epilepsy with an unknown cause. This means that our understanding of the phenotypes that we currently associate with a specific etiology (such as genetic) may be skewed to only the most severe phenotypes,... more »

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2020 Epilepsy Research Benchmarks

Epilepsy surgery deserves its own benchmark and more funding

Epilepsy surgery is no longer considered a last resort for patients with drug-resistant seizures; however, there remain significant and systemic barriers to prompt referral to epilepsy surgery evaluation. This deprives the patient of potential treatments that may be their only hope for seizure freedom or reduction in seizure burden.

One massive barrier is the lack of surgical outcomes knowledge - especially functional... more »

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2020 Epilepsy Research Benchmarks

Risks of Fetal Antiseizure Medicine Exposure

Antiseizure medicines (ASMs) are one of the most commonly used teratogens. The current benchmarks include impact of epilepsy on women's health outcomes and health of their offspring (fetal and neonatal development, but progress is slow and the risks of fetal exposure for most ASMs remain unknown. Integrated basic and clinical research is needed to fully delineate risks and underlying mechanisms for ASM-induced anatomical... more »

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2020 Epilepsy Research Benchmarks

Merge and share datasets across different research studies trending idea

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 »

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2020 Epilepsy Research Benchmarks

Epilepsy-related "training" datasets for machine learning

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 »

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2020 Epilepsy Research Benchmarks

Research in Health Disparities trending idea

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 »

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2020 Epilepsy Research Benchmarks

Strategically integrating the benchmarks for clarity

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 »

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2020 Epilepsy Research Benchmarks

Human Brain Organoid Models

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 »

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2020 Epilepsy Research Benchmarks

A cure is important but so is the person

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 »

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