The International

Seizure Diary Consortium (ISDC)

An international collaboration led by Beth Israel Deaconess Medical Center

MISSION:

The ISDC is committed to using Big Data techniques on seizure diary databases to find new ways to help patients with epilepsy.

VISION:

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:

COMING SOON:

NEWS:

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!