Seizure Forecasting Study - You can participate!
Dr. Daniel Goldenholz at the Epilepsy + Data Science Lab at Harvard's Beth Israel Deaconess Medical Center is currently recruiting people with epilepsy to participate in a research study. The goal of the study is to test out our new seizure forecasting system in a safe and responsible way.
In 2020, we published early results that show a seizure forecasting system we developed might be able to tell people with epilepsy their risk of seizures using only a seizure diary.
All participants must:
- Have drug-resistant epilepsy
- Be willing to use Seizure Tracker to record seizures for 10 months
- Be willing to use Medisafe to record medication adherence for 10 months
- Have a typical rate of at least 1 seizure in 3 months
There is no compensation for participation. Participants will receive monthly seizure forecasting results and a personalized report of how accurate the forecasts were for them.
What to expect...
Once enrolled, an outline of the study is as follows:
Maintain your seizure diary
You will be asked to continue completing your Seizure Tracker diary during the study. You will be asked to share this diary with the study team for the duration of the study.
Pill tracker
You will be asked to maintain tracking of your anti-seizure medications using the MediSafe mobile app for the duration of the study.
Weekly surveys (10 months)
After enrolling, you will be contacted weekly to fill out a brief survey. The most important aspect of the survey is making sure that your seizure diary in SeizureTracker is complete and accurate. Each of these surveys will take about 5 minutes. It should take about 1 minute per week to make sure your Seizure Tracker account is up to date.
Monthly reports
Once per month, you will get a report of the results of seizure forecasts from your seizure diary. We will provide these reports AFTER the fact, as the forecast system is still being studied.
If you are interested in learning more about the study, please contact us at: epilepsyplusdatascience@bidmc.harvard.edu.
