Seizures and TSC: Your Data Matters!
With your help, we can connect important seizure and clinical information to enable researchers to improve outcomes and treatment insights for you and your family.
TSC Alliance and Seizure Tracker™ join together to advance epilepsy research
The TSC Alliance has established a data sharing partnership with Seizure Tracker. Seizure Tracker™ is the largest repository of patient-entered seizure and therapy data in the world. Users may elect to share their self-reported data from the Seizure Tracker application with the TSC Alliance for use by TSC researchers.
Connect your Seizure Tracker data with the TSC Alliance
How to get started:
- Submit the interest form
- TSC Alliance team member will send a unique link to sign up through Seizure Tracker
- Connect your data
“Seizure Tracker helps to track seizure incidences and how they might correlate with various therapies including anti-seizure drug (ASD) dose and timing, ASD change, brain surgery and even the effects of other medications such as birth control methods. With the app, it’s very easy to capture the seizures on video and time them. We found that nearly half of her seizures happen on weekends or during school breaks, which prompted us to adjust bedtime dosing to ensure sufficient medication was in her bloodstream until the morning dose is given.”
–Reiko Donato, mother to Alex who lives with TSC, has been using Seizure Tracker since its initiation.
See how you fit into the TSC Seizure Tracker community
SeizureTracker.com includes a page dedicated to “Seizures and Tuberous Sclerosis Complex,” where visitors can view data related to seizure types specific to Seizure Tracker™ users who identify themselves or the person they care for as having TSC.