Common data elements for epilepsy mobile health systems

Daniel M. Goldenholz, Robert Moss, David A. Jost, Nathan E. Crone, Gregory Krauss, Rosalind Picard, Chiara Caborni, Jose E Cavazos, John Hixson, Tobias Loddenkemper, Tracy Dixon Salazar, Laura Lubbers, Lauren C. Harte-Hargrove, Vicky Whittemore, Jonas Duun-Henriksen, Eric Dolan, Nitish Kasturia, Mark Oberemk, Mark J. Cook, Mark Lehmkuhle & 2 others Michael R. Sperling, Patricia O. Shafer

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Objective: Common data elements (CDEs) are currently unavailable for mobile health (mHealth) in epilepsy devices and related applications. As a result, despite expansive growth of new digital services for people with epilepsy, information collected is often not interoperable or directly comparable. We aim to correct this problem through development of industry-wide standards for mHealth epilepsy data. Methods: Using a group of stakeholders from industry, academia, and patient advocacy organizations, we offer a consensus statement for the elements that may facilitate communication among different systems. Results: A consensus statement is presented for epilepsy mHealth CDEs. Significance: Although it is not exclusive, we believe that the use of a minimal common information denominator, specifically these CDEs, will promote innovation, accelerate scientific discovery, and enhance clinical usage across applications and devices in the epilepsy mHealth space. As a consequence, people with epilepsy will have greater flexibility and ultimately more powerful tools to improve their lives.

Original languageEnglish (US)
JournalEpilepsia
DOIs
StateAccepted/In press - Jan 1 2018

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Telemedicine
Epilepsy
Industry
Patient Advocacy
Equipment and Supplies
Common Data Elements
Organizations
Growth

Keywords

  • Common data elements
  • Devices
  • Epilepsy
  • MHealth
  • Seizure diary
  • Standards

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

Cite this

Goldenholz, D. M., Moss, R., Jost, D. A., Crone, N. E., Krauss, G., Picard, R., ... Shafer, P. O. (Accepted/In press). Common data elements for epilepsy mobile health systems. Epilepsia. https://doi.org/10.1111/epi.14066

Common data elements for epilepsy mobile health systems. / Goldenholz, Daniel M.; Moss, Robert; Jost, David A.; Crone, Nathan E.; Krauss, Gregory; Picard, Rosalind; Caborni, Chiara; Cavazos, Jose E; Hixson, John; Loddenkemper, Tobias; Salazar, Tracy Dixon; Lubbers, Laura; Harte-Hargrove, Lauren C.; Whittemore, Vicky; Duun-Henriksen, Jonas; Dolan, Eric; Kasturia, Nitish; Oberemk, Mark; Cook, Mark J.; Lehmkuhle, Mark; Sperling, Michael R.; Shafer, Patricia O.

In: Epilepsia, 01.01.2018.

Research output: Contribution to journalArticle

Goldenholz, DM, Moss, R, Jost, DA, Crone, NE, Krauss, G, Picard, R, Caborni, C, Cavazos, JE, Hixson, J, Loddenkemper, T, Salazar, TD, Lubbers, L, Harte-Hargrove, LC, Whittemore, V, Duun-Henriksen, J, Dolan, E, Kasturia, N, Oberemk, M, Cook, MJ, Lehmkuhle, M, Sperling, MR & Shafer, PO 2018, 'Common data elements for epilepsy mobile health systems', Epilepsia. https://doi.org/10.1111/epi.14066
Goldenholz DM, Moss R, Jost DA, Crone NE, Krauss G, Picard R et al. Common data elements for epilepsy mobile health systems. Epilepsia. 2018 Jan 1. https://doi.org/10.1111/epi.14066
Goldenholz, Daniel M. ; Moss, Robert ; Jost, David A. ; Crone, Nathan E. ; Krauss, Gregory ; Picard, Rosalind ; Caborni, Chiara ; Cavazos, Jose E ; Hixson, John ; Loddenkemper, Tobias ; Salazar, Tracy Dixon ; Lubbers, Laura ; Harte-Hargrove, Lauren C. ; Whittemore, Vicky ; Duun-Henriksen, Jonas ; Dolan, Eric ; Kasturia, Nitish ; Oberemk, Mark ; Cook, Mark J. ; Lehmkuhle, Mark ; Sperling, Michael R. ; Shafer, Patricia O. / Common data elements for epilepsy mobile health systems. In: Epilepsia. 2018.
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