Daniel M Goldenholz1,2, Robert Moss3, David A Jost4, Nathan E Crone5, Gregory Krauss5, Rosalind Picard6,7, Chiara Caborni6, Jose E Cavazos8,9, John Hixson10, Tobias Loddenkemper11, Tracy Dixon Salazar12, Laura Lubbers13, Lauren C Harte-Hargrove13, Vicky Whittemore14, Jonas Duun-Henriksen15, Eric Dolan16, Nitish Kasturia16, Mark Oberemk16, Mark J Cook17, Mark Lehmkuhle18, Michael R Sperling19, Patricia O Shafer1,4. 1. Division of Epilepsy, Beth Israel Deaconess Medical Center, Boston, MA, USA. 2. Clinical Epilepsy Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USA. 3. SeizureTracker, Alexandria, VA, USA. 4. Digital Strategy, Epilepsy Foundation, Landover, MD, USA. 5. Department of Neurology, Johns Hopkins University, Baltimore, MD, USA. 6. Empatica, Milan, Italy. 7. Media Lab, Massachusetts Institute of Technology, Cambridge, MA, USA. 8. Brain Sentinel, San Antonio, TX, USA. 9. Department of Neurology, University of Texas Health San Antonio, San Antonio, TX, USA. 10. Department of Neurology, University of California, San Francisco, San Francisco, CA, USA. 11. Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Boston, MA, USA. 12. LGS Foundation, San Diego, CA, USA. 13. Citizens United for Research in Epilepsy, Chicago, IL, USA. 14. Extramural Program Office, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Rockville, MD, USA. 15. UNEEG Medical, Lynge, Denmark. 16. Neutun Labs, BMOS, Toronto, Ontario, Canada. 17. Department of Neurology, University of Melbourne, Parkville, Victoria, Australia. 18. EpiTel, Salt Lake City, UT, USA. 19. Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA.
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. Wiley Periodicals, Inc.
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. Wiley Periodicals, Inc.
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