For the development of the database a data collection template was designed by a working group of several representatives of the ICARE member organizations. The template allows for categorization of the epilepsy research by different layers of data categories: 1. Award Information, 2. Award Research Categories, 3. Benchmark Areas.
Award Information
This category is to collect basic information about the award such as ID, Investigator information and award type and award purpose information. Award type distinguishes individual, team, institutional or industry awards and purpose denotes research, training, resources, and educational support awards.
Research Categories
The research proposed for each project is classified in three categories. First is the broad category of basic, translational or clinical research type. Second is the research classification of etiology, biology, prevention, diagnosis and biomarkers, treatment, outcomes and model systems. And third is according to the epilepsy and/or seizure syndromes.
2014 NINDS Benchmarks for Epilepsy Research
All projects are assessed against the 2014 NINDS Benchmarks for Epilepsy Research. The 2014 NINDS benchmarks are research priorities identified by the epilepsy research community. The broad goals are intended to serve as a shared framework for focusing the community’s efforts and benchmarking important advances in the field as they are achieved. They are organized as a two tier system around four main research areas, with each area having four to seven identified benchmarks (see: http://www.ninds.nih.gov/research/epilepsyweb/2014Bechmarks-Final-PDF.pdf).
The four areas are:
Ontology Definitions
Award Information
Award Type
| Award Type |
Definitions |
| Individual |
an award made to support a project conducted by a single principal investigator (or Co-PIs) or trainee. Note that the grant itself may be awarded to an institution on behalf of the principal investigator. |
| Team |
an award made to support a project conducted by a team of investigators either within one or more institutions. Note that the grant itself may be awarded to an institution on behalf of the principal investigator. |
| Institutional |
an award made to an institution to implementation of an educational, training or research program |
| Center |
an award made to an institution to support multiple investigator led projects and/or core activities |
| Industry |
awards made to for-profit industry |
Award Purpose
| Award Purpose |
Definitions |
| Training & Career Development |
Awards designed to prepare investigators for careers in biomedical sciences. Training awards can be institutional or individual fellowships. Individuals are typically in graduate or medical school or in training positions immediately following receipt of PhD or MD or other advanced degree. Or to develop the independent careers of researchers who have already earned their advanced degree |
| Research |
Awards that support biomedical or public health research |
| Resources and Infrastructure |
Awards made to support the implementation and maintenance of resources (like databases, repositories) and/or core facilities or those that provide for the acquisition of research equipment, technology or infrastructure |
| Educational Support |
Awards made to support educational activities such as conference and workshops, and efforts to create, implement, evaluate and disseminate new courses, curricula and educational approaches to train biomedical scientists, healthcare professionals, patients, care givers, families and other community members |
Research Type
| Research Type |
Definitions |
| Basic |
Basic research is the systematic study of the fundamental aspects of phenomena and of observable facts without specific development of processes, products or clinical applications. Projects typically include studies of the mechanisms of normal or disease related processes at the molecular, cellular, systems or organ level. |
| Translational |
Translational research is the process of developing ideas, insights, and discoveries generated through basic scientific inquiry for the treatment or prevention of human disease. |
| Clinical |
Patient-oriented research. Research conducted with human subjects (or on material of human origin such as tissues, specimens and cognitive phenomena) for which an investigator directly interacts with human subjects. Excluded from this definition are in vitro studies that utilize human tissues that cannot be linked to a living individual. Patient-oriented research typically includes therapeutic interventions and applications of new technologies, clinical trials, epidemiologic and behavioral studies, outcomes research and health services research. |
Research Classification
| Research Classification |
Definitions |
| Etiology |
Research included in this category aims to identify the causes or origins of epilepsy - genetic, infectious, metabolic, environmental, or other factors, and the interactions between these factors |
| Mechanism of Disease |
Research included in this category looks at the biology of how epilepsy/seizures starts and progresses as well as normal biology relevant to these processes |
| Prevention |
Research included in this category looks at identifying interventions which reduce the risk of developing epilepsy by reducing exposure to risk factors and/or increasing protective factors. Interventions aimed at prevention of complications of epilepsy or its co-occurring conditions may also be included. Interventions may target lifestyle or may involve drugs or vaccines |
| Early Detection/ Diagnosis/Prognosis |
Research included in this category focuses on identifying and testing biomarkers, technology methods or predictive models that are helpful in detecting and/or diagnosing as well as predicting the outcome or chance of recurrence |
| Treatment |
Research included in this category focuses on identifying and testing treatments, such as novel therapeutics, devices or other interventions. |
| Outcomes |
Research included in this category includes a broad range of areas: surveillance and epidemiology; ethics, education and communication approaches for health care professionals, patients and families, and community members; patient care and health care services research; effectiveness research and phase 4 trials |
| Model Systems |
Research included in this category looks at the development of new animal models, cell cultures and computer simulations and their application to other studies across the spectrum of epilepsy research |
Epilepsy or Seizure Condition
| Epilepsy or Seizure Condition |
| ADEAF - Autosomal Dominant Epilepsy with Auditory Features |
| ADNFLE - Autosomal-Dominant Nocturnal Frontal Lobe Epilepsy |
| Alpers Syndrome |
| Angelman Syndrome |
| BECTS - Benign Epilepsy with Centrotemporal Spikes |
| BFNE - Benign Familial Neonatal Epilepsy |
| CAE - Childhood Absence Epilepsy |
| Catamenial Seizures |
| Childhood Epilepsy |
| Dravet Syndrome |
| Early Life Seizures |
| EME - Early Myoclonic Encephalopathy |
| Encephalitis Acquired Epilepsy |
| Epilepsy/Seizures associated with other disorders (like Alzheimer's, Autism, Fragile X, Malaria, ...) |
| Epilepsy/Seizures in pregnant women |
| Epilepsy/Seizures in the elderly |
| Epileptic Encephalopathies |
| Febrile Seizures |
| Focal Epilepsy |
| GEFS+ - Generalized Epilepsy with Febrile Seizures plus |
| Genetic Epilepsy |
| Hemiconvulsion–Hemiplegia–Epilepsy |
| Hypothalamic Hamartoma with Gelastic Seizures |
| IS - Infantile Spasms |
| JAE - Juvenile Absence Epilepsy |
| JME - Juvenile Myoclonic Epilepsy |
| KCNQ2 Encephalopathy |
| Lafora Disease |
| LGS - Lennox -Gastaut Syndrome |
| LKS - Landau-Kleffner syndrome |
| Malformations of Cortical Development |
| Neonatal Seizures |
| Neurocysticercosis |
| Nodding Syndrome |
| Non-Epileptic Seizures |
| Ohtahara Syndrome |
| PCDH19 Epilepsy |
| PME - Progressive Myoclonus Epilepsies |
| PMSE - Polyhydramnios, Megalencephaly and Symptomatic Epilepsy Syndrome |
| PTE - Post Traumatic Epilepsy |
| Rasmussen Syndrome |
| Reflex Epilepsies |
| Seizures |
| Status Epilepticus |
| Sturge-Weber Syndrome |
| Succinic Semialdehyde Dehydrogenase Deficiency |
| SUDEP |
| TLE - Temporal Lobe Epilepsy |
| TSC - Tuberous Sclerosis Complex |
| West Syndrome |
| Epilepsy - not otherwise specified |
Based on table 3 in Berg AT,et al. (2010)Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005–2009.Epilepsia 51:676–685.
2014 NINDS Benchmarks for Epilepsy Research
| I |
Understand the causes of the epilepsies and epilepsy-related neurologic, psychiatric, and somatic conditions |
| A |
Identify new genes and pathways associated with the epilepsies and epilepsy-related conditions |
| B |
Identify new infectious, immune, age-related, environmental, or other causes and risk factors associated with the epilepsies and epilepsy-related conditions |
| C |
Determine whether factors related to age, gender, race/ethnicity, socioeconomic status, and other features of specific populations affect risk and mechanisms of epilepsy and epilepsy-related conditions |
| D |
Determine whether the bi-directional relationships that exist between the epilepsies and several co-occurring conditions (e.g. , neuropsychiatric or neurodevelopmental disorders) result from the same underlying causal mechanisms, interacting mechanisms, or are a consequence of the first presenting condition |
| II |
Prevent epilepsy and its progression |
| A |
Understand epileptogenic processes involved in epilepsies with neurodevelopmental origins, including those due to genetic or presumed genetic causes |
| B |
Understand epileptogenic processes involved in the development of epilepsy following traumatic brain injury, stroke, brain tumor, infections, neurodegeneration, or other insults to the brain |
| C |
Identify biomarkers that will aid in identifying, predicting, and monitoring epileptogenesis and disease progression, including markers early after injury/insult that identify those people at risk for epilepsy |
| D |
Develop or refine models aligned with the etiologies of human epilepsies to enable improved understanding of epileptogenesis and rigorous preclinical therapy development for epilepsy prevention or disease modification |
| E |
Identify new targets and develop interventions to prevent or modify epileptogenesis and the progression of epilepsy and epilepsy-related conditions |
| III |
Improve treatment options for controlling seizures and epilepsy-related conditions without side effects |
| A |
Understand the initiation, propagation, and termination of seizures at the network level in different forms of epilepsy |
| B |
Identify biomarkers for assessing or predicting treatment response, including markers that may identify specific populations that are likely to have good outcomes or develop adverse responses |
| C |
Develop or refine models that are aligned with etiologies and clinical features of human epilepsies, especially treatment resistant forms, to enable improved understanding of ictogenesis and preclinical development to improve seizure control with fewer side effects. Establish the sensitivity and specificity of these models with regard to current therapies |
| D |
Identify, develop, and improve interventions to detect, predict, prevent, or terminate seizures, including approaches suitable for use in the home and other non-medical settings |
| E |
Identify, develop, and improve anti-seizure therapies that target (either alone, or in combination) novel or multiple seizure mechanisms |
| F |
Develop, improve, and implement interventions for effective self-management, including treatment adherence |
| G |
Develop and validate objective patient-centered outcome metrics for clinical studies |
| IV |
Limit or prevent adverse consequences of seizures and their treatment across the lifespan |
| A |
Understand and limit adverse impacts of seizures on quality of life, including effects on neurodevelopment, mental health, intellectual abilities, and other neurological and non-neurological functions |
| B |
Understand and limit adverse impacts of anti-seizure treatments (medical, surgical, or other interventions) on quality of life, including effects on neurodevelopment, mental health, intellectual abilities, and other neurological and non-neurological functions |
| C |
Understand risk factors and mechanisms involved in non-epileptic seizures (NES). Develop effective approaches for earlier and accurate diagnosis and treatment |
| D |
Identify causes, risk factors, and potential preventive strategies for sudden unexpected death in epilepsy (SUDEP) and other epilepsy-related mortality (for example, suicide) in people with epilepsy |
| E |
Identify the impact of pharmacological treatment of the epilepsies on fetal and neonatal development. Develop strategies to control seizures in pregnancy without causing harm to either the mother or child |
