Seizure Success® and You!
Seizure Tracker - Empowering Researchers to Improve Clinical Care
There are multiple tools within the Seizure Tracker system that enable users to share their data with epilepsy researchers.
The Data Share system allows Seizure Tracker users to easily connect their data with partner databases. Our de-identified and unlinked population data exports are empowering epilepsy researchers across the globe.
Did you know...
Seizure Tracker is the largest data base of patient entered seizure activity and surrounding therapies in world (over 2.7 million events recorded). Seizure Tracker users are helping unlock the mysteries of seizure progression, how seizures present in different subgroups, clinical trial optimization, therapy efficacy, non-invasive seizure forecasting/prediction methods, etc..
Here are some research highlights:
- Association of reductions in rescue medication requirements with vagus nerve stimulation: Results of long-term community collected data from a seizure diary app Epilepsy and Behavior 2024 Oct.
- Development of a core outcome set for quality of life for adults with drug-resistant epilepsy: A multistakeholder Delphi consensus study Epilepsia 2022 Dec.
- Leveraging electronic patient diaries in SUDEP risk evaluation Epilepsy Research, Volume 182, 2022
- A Bayesian switching linear dynamical system for estimating seizure chronotypes Proceedings of the National Academy of Sciences, 2022-11-16
- Impact of intellectual and developmental disability on quality-of-life priorities in adults with epilepsy Epilepsy Behav. 2021 Oct
- Guidelines for Conducting Ethical Artificial Intelligence Research in Neurology Neurology, 2021 Sept
- Patterns of Recording Epileptic Spasms in an Electronic Seizure Diary Compared With Video-EEG and Historical Cohorts Pediatr Neurol. 2021 Sep;122:27-34. doi: 10.1016/j.pediatrneurol.2021.04.008. Epub 2021 Apr 23.
- Evaluation and recommendations for effective data visualization for seizure forecasting algorithms JAMIA Open, Volume 4, Issue 1, January 2021
- Development and Validation of Forecasting Next Reported Seizure Using e‐Diaries Annals of Neurology, Volume 88, Issue 3, September 2020
- Individualizing the definition of seizure clusters based on temporal clustering analysis Epilepsy Res. 2020 Jul;163:106330
- Prospective Validation Study of an Epilepsy Seizure Risk System for Outpatient Evaluation Epilepsia. 2020 Jan
- Seizure detection devices and health-related quality of life: A patient- and caregiver-centered evaluation Epilepsy Behav. 2020 Apr
- Daylight saving time transitions are not associated with increased seizure incidence Epilepsia. 2019 Apr
- Natural history of generalized motor seizures: A retrospective analysis Seizure. 2020 Aug
- Circadian and circaseptan rhythms in human epilepsy: a retrospective cohort study The Lancet - Neurology, 2018
- Characteristics of large patient-reported outcomes: Where can one million seizures get us? Epilepsia Open, 2018
- Common data elements for epilepsy mobile health systems. Epilepsia 2018
- Different as night and day: isolated seizures, clusters and status epilepticus. Epilepsia 2018 Apr 23.
- Epilepsy as a Dynamic Disease: A Model for Differentiating Seizure Risk from Natural Variability. Epilepsia Open 2018, 3: 236-246
- Is seizure frequency variance a predictable quantity? Ann Clin Transl Neurol. doi:10.1002/acn3.519
- Does accounting for seizure frequency variability increase clinical trial power? Epilepsy Res. 2017 Jul 25. pii: S0920-1211(17)30268-1.
- Monte Carlo Simulations of Randomized Clinical Trials in Epilepsy. Annals of Clinical and Translational Neurology. 2017. 24 May.
- A big data approach to the development of mixed-effects models for seizure count data. Epilepsia. 2017 May; 58(5):835-844.
- Patient-centered design criteria for wearable seizure detection devices. Epilepsy Behav. 2016 Nov;64(Pt A):116-121.
- Confusing placebo effect with natural history in epilepsy: A big data approach. Ann Neurol. 2015 Sep;78(3):329-36.
Population exports are done through a simple researcher request process. Submitted AIMs are reviewed for user interest and patient impact. Please feel free to contact us with any questions or data requests.
A majority of the retrospective research being done through the Seizure Tracker population export tools has been facilitated through a collaboration with the International Seizure Diary Consortium (ISDC).
Visit the ISDC website here to learn more about the efforts to leverage "Big Data" in epilepsy research.
Interact with the Seizure Tracker user base through our surveying system...
Use the robust Seizure Tracker surveying system to directly interact with our 28,000+ registered users. Past advocacy and industry sponsored surveys have had a relatively high response rate in a matter of days.
