Big data in epilepsy: Clinical and research considerations. Report from the Epilepsy Big Data Task Force of the International League Against Epilepsy

Epilepsia. 2020 Sep;61(9):1869-1883. doi: 10.1111/epi.16633. Epub 2020 Aug 7.


Epilepsy is a heterogeneous condition with disparate etiologies and phenotypic and genotypic characteristics. Clinical and research aspects are accordingly varied, ranging from epidemiological to molecular, spanning clinical trials and outcomes, gene and drug discovery, imaging, electroencephalography, pathology, epilepsy surgery, digital technologies, and numerous others. Epilepsy data are collected in the terabytes and petabytes, pushing the limits of current capabilities. Modern computing firepower and advances in machine and deep learning, pioneered in other diseases, open up exciting possibilities for epilepsy too. However, without carefully designed approaches to acquiring, standardizing, curating, and making available such data, there is a risk of failure. Thus, careful construction of relevant ontologies, with intimate stakeholder inputs, provides the requisite scaffolding for more ambitious big data undertakings, such as an epilepsy data commons. In this review, we assess the clinical and research epilepsy landscapes in the big data arena, current challenges, and future directions, and make the case for a systematic approach to epilepsy big data.

Keywords: big data; epilepsy; epilepsy informatics; epilepsy ontology.

MeSH terms

  • Advisory Committees
  • Big Data*
  • Biological Ontologies*
  • Biomedical Research*
  • Brain / diagnostic imaging
  • Brain / pathology
  • Brain / physiopathology*
  • Common Data Elements
  • Computer Security
  • Confidentiality
  • Deep Learning
  • Electrocorticography*
  • Electronic Health Records
  • Epilepsy / diagnostic imaging
  • Epilepsy / genetics
  • Epilepsy / pathology
  • Epilepsy / physiopathology*
  • Genomics*
  • Humans
  • Information Dissemination
  • Neuroimaging
  • Research Support as Topic
  • Smartphone
  • Societies, Medical
  • Stakeholder Participation
  • Telemedicine
  • Wearable Electronic Devices