Seizure Diary Consortium (ISDC)
An international collaboration led by Beth Israel Deaconess Medical Center
The ISDC is committed to using Big Data techniques on seizure diary databases to find new ways to help patients with epilepsy.
Unifying multiple sources of high quality clinical seizure diary data from patient reported outcomes, biosensors, clinical trials, etc. under a single entity, and then distributing segments to investigators with proven track records - all the while preserving patient privacy and maintaining high ethical standards for data usage. In short:
Connecting the best data with the best minds, to get the best results.
CURRENT SOURCES OF BIG DATA:
2018.08.22 - we have a 4 new abstracts for the coming 2018 American Epilepsy Society annual meeting. Check us out! They are now listed on the Publications link above.
- Goldenholz DM, Moss R, Herman S. Is seizure risk forecasting possible using patient reported seizure diaries without EEG or biosensor data? AES 2018.
- Casassa C, Rathburn E, Goldenholz DM. Self-Management in Epilepsy: Web-Based Seizure Tracking Applications. AES 2018.
- Ayub N, Chiang S, Moss R, Goldenholz DM. Longitudinal SUDEP Risk Stratification with Electronic Diaries. AES 2018.
- Karoly PJ, Goldenholz DM, Moss R, Theodore WH, Grayden DB, Freestone DR, Cook MJ. Multi-day seizure cycles: daily, weekly and monthly patterns. AES 2018.
2018.05.15 - we have 2 new accepted papers! great work everyone!
The first is a paper about the demographics of patients using seizuretracker.
The second is a paper about how to use location information while preserving privacy. Links will be up in the publications section once the articles are live.
2018.04.05 - our link for the Common Data Elements paper is live, linking directly to the full text of the article and supplement in Epilepsia!
2018.03.19 - we have 2 more papers coming out! One on diurnal variations of seizure patterns and one on seizure risk state modeling.
2018.02.28 - Epilepsia has accepted the ISDC Common Data Elements in mobile health for epilepsy consensus document! This is a huge accomplishment based on the hard work of many people! Links to this paper will be added to the website once the paper goes live.
2018.02.16 - we are waiting patiently for Epilepsia to let us know about our recent submission about the Common Data Elements that we made by bringing together academics, government, patient advocacy, and device/app makers to build a broad consensus. Stay tuned!
2018.01.30 - We already have 2 papers and one abstract out for this year alone! Way to go team!