Providing you with tools to help understand your seizures and enhance your communication with your care providers along with information on possible therapies. Surveys and Polls can enhance your understanding in how you compare to others with epilepsy.
Featured Resources
As a community, we know that seizures and related therapies can impact our lives in many ways.
The Seizure Tracker "IT'S NOT JUST SEIZURES" initiative aims to better understand the full impact of epilepsy on you and your family. That knowledge will help us build tools to manage all aspects of your quality of life, not just seizures.
Sudden Unexpected Death in Epilepsy (SUDEP): What You Need to Know SUDEP occurs when a person with a history of epilepsy dies suddenly or unexpectedly, with or without evidence of having had a seizure, and with no other cause of death evident in an autopsy. While SUDEP is a difficult topic to think about, understanding risk can help alert you to harmful situations where SUDEP risk increases.
Dynamic Seizure Action Plan - Are you prepared for a seizure emergency? Check out the new resource on SeizureTracker.com! Seizure action plans can play an important role in sharing daily and emergency treatment priorities with different members of your care team. Use the new Seizure Tracker Dynamic Seizure Action Plan (DSAP) to enhance your seizure care by effectively communicating your needs with others.
School Preparedness Don’t go to School without a Seizure Tracker Dynamic Seizure Action Plan! Learn about the new Seizure Tracker "Dynamic Seizure action Plan" and how to leverage other tools to plan for a safe return to school.
Epilepsy Research Studies How much do you know about clinical trials? How would I find one? Who participates? If you currently take a medication prescribed by a doctor, it is available because patients like you participated in a clinical trial. Clinical trials are a formal way to conduct human research focused on finding better ways to diagnose, prevent, treat and understand human disease. Learn about clinical trials and use the Trial Finder tool to locate a research study near you
Seizures and Tuberous Sclerosis Complex Approximately 85% of individuals with tuberous sclerosis complex (TSC) struggle with epilepsy. Seizures associated with TSC are often hard to control. See how you compare to others in the tuberous sclerosis complex community, find resources to help manage seizures and contribute to valuable research.
Amazon Alexa - Seizure Tracking by voice
Logging seizures and keeping good records is an essential skill for managing epilepsy. Doctors will rely on your observations, medication usage and surrounding lifestyle information to help make treatment decisions. Alexa makes it easier to collect accurate data.
Empowering Women with Epilepsy
Check out the new and existing tools on Seizure Tracker designed specifically for Women living with seizures. Women can record their menstrual cycle, birth control methods and pregnancies on SeizureTracker.com. This data can help your care providers make more informed desicions about therapies.
Seizure Tracker Research - Improving 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-idetified and unlinked population data exports are empowering epilepsy researchers accross the globe.
Tools
Take Control and Build Communication
These tools will empower you to manage your seizures, engage in research and help with communication between you and your care providers.
Dynamic Seizure Action Plan - Are you prepared for a seizure emergency? Check out the new resource on SeizureTracker.com! Seizure action plans can play an important role in sharing daily and emergency treatment priorities with different members of your care team. Use the new Seizure Tracker Dynamic Seizure Action Plan (DSAP) to enhance your seizure care by effectively communicating your needs with others.
Amazon Alexa - Track your seizures by voice. Logging seizures and keeping good records is an essential skill for managing epilepsy. Doctors will rely on your observations, medication usage and surrounding lifestyle information to help make treatment decisions. Alexa makes it easier to collect accurate data.
Seizure Tracker Android app Easily video tape and log seizures as they happen. Building on the SeizureTracker.com experience, this app puts a seizure recording device in the palm of your hand. Record recue medications and VNS magnet swipes as the seizure happens. Simply sync your device to your SeizureTracker.com account and share the extensive reports availbale on the website with your care providers.
My Seizures, Know More Empowering people living with epilepsy to seek more specialized epilepsy care if they are having seizures, side-effects from drugs, other health problems, or social or educational issues.
Seizure Tracker iPhone and Apple watch app Video tape and log seizures as they happen. You can also access this extensive seizure diary from your Apple watch.
In-home Video Seizure Monitoring In-home video seizure monitoring can be a great way to better understand your seizure activity. Combining network security cameras and a mobile device can provide a simple seizure alerting system as well.
Information
Inform and Empower
This information will help you better understand the therapies available to help control your seizures. It will also give a better idea of your role in in new therapy development.
As a community, we know that seizures and related therapies can impact our lives in many ways.
The Seizure Tracker "IT'S NOT JUST SEIZURES" initiative aims to better understand the full impact of epilepsy on you and your family. That knowledge will help us build tools to manage all aspects of your quality of life, not just seizures.
Sudden Unexpected Death in Epilepsy (SUDEP): What You Need to Know SUDEP occurs when a person with a history of epilepsy dies suddenly or unexpectedly, with or without evidence of having had a seizure, and with no other cause of death evident in an autopsy. While SUDEP is a difficult topic to think about, understanding risk can help alert you to harmful situations where SUDEP risk increases.
Epilepsy Research Studies How much do you know about clinical trials? How would I find one? Who participates? If you currently take a medication prescribed by a doctor, it is available because patients like you participated in a clinical trial. Clinical trials are a formal way to conduct human research focused on finding better ways to diagnose, prevent, treat and understand human disease. Learn about clinical trials and use the Trial Finder tool to locate a research study near you
Seizures and Tuberous Sclerosis Complex Approximately 85% of individuals with tuberous sclerosis complex (TSC) struggle with epilepsy. Seizures associated with TSC are often hard to control. See how you compare to others in the tuberous sclerosis complex community, find resources to help manage seizures and contribute to valuable research.
School Preparedness Don’t go to School without a Seizure Tracker Dynamic Seizure Action Plan! Learn about the new Seizure Tracker "Dynamic Seizure action Plan" and how to leverage other tools to plan for a safe return to school.
Empowering Women with Epilepsy Check out the new and existing tools on Seizure Tracker designed specifically for Women living with seizures. Women can record their menstrual cycle, birth control methods and pregnancies on SeizureTracker.com. This data can help your care providers make more informed desicions about therapies.
Seizure Tracker Research - Improving 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-idetified and unlinked population data exports are empowering epilepsy researchers accross the globe.
Infantile Spasms Awareness Infantile Spasms (IS) are a catastrophic form of epilepsy that often causes severe intellectual disabilities. Early diagnosis and accurate treatments are critical to stopping the abnormal brainwave patterns (Hypsarrhythmia) associated with IS. Your help in educating the public and health care providers about Infantile Spasms is crucial in minimizing the impact.
Genetics in Epilepsy Knowing the genetic basis of your epilepsy is valuable for obtaining a diagnosis, estimating prognosis, determining risks, and guiding treatment choices. Finding the genes that cause epilepsy could help us find cures faster because of the information that could be learned about the condition. Through genetic testing you may learn more about the cause of your seizures and you may even help advance research.
Vagus Nerve Stimulation (VNS) VNS Therapy® offers an alternative for long-term seizure control, doesn't add drug-related side effects and may improve your quality of life. VNS Therapy involves a minimally invasive outpatient procedure that is usually covered by your medical insurance and does not involve brain surgery. Did you know there are tools on Seizure Tracker to help you monitor epilepsy therapies, including VNS?
Surveys/Polls
Participate and Communicate
The Seizure Success and You survey and News Tracks polls help you understand how you compare to others in the epilepsy community.
COVID-19 Epilepsy Experience Research Survey
Seizure Tracker is working with clinicians and researchers at Beth Israel Deaconess Medical Center (BIDMC)/Harvard Medical School to help healthcare providers better understand what concerns you most during the COVID-19 pandemic.
Aicardi Syndrome - Seizure burden and research interest survey
Help us understand the burden of seizures on families living with Aicardi and measure the interest in research participation.
Seizure Risk Forecast/Prediction graphs survey Tell us what type of charts or visualizations you want for seizure forecasting or prediction.
We are currently working with researchers and data scientists to provide you with reliable seizure risk indicators. You can help...
Epilepsy - It's not just Seizures: Impact Survey
As a community, we know that seizures and related therapies can impact our lives in many ways. We need your help...
Share your thoughts on the impact Epilepsy has on you and your family.
Infantile Spasms/Seizure Medication Access Survey
Please let us know about any problems you may have had getting medication for Infantile Spasms or Seizures. Have you had difficulties paying for a medication or has the medication not been available when you needed it? Take the survey and tell us about your experiences.
Oral Seizure Rescue Medication Survey
Please help us understand your feelings about rescue medications being administered through the mouth. Would you either prefer an oral gel or a dissoluble thin strip as an at-home medication to administer or receive? Voice your opinion about your delivery method preference so the epilepsy community can better understand your needs. Take the survey.
Seizure Cycles and Patterns Survey Recent research has shown that seizures may have a tendency to cycle. This has huge implications on our understanding of epilepsy and how to treat for seizures. Help us understand the prevalence and characteristics of seizure cycles so we can provide you with more effective tools to manage your epilepsy.
Seizure Rescue Medications - Community use and preferences Take this survey and help us understand the use of Seizure Rescue Medications in the epilepsy community. Tell us your preferred way to take rescue medications and see how others in the community feel. You can see the community responses before or after taking the survey.
Wearable Seizure Detection and Alerting Help us understand your interest in wearable seizure detection devices and management. We are interested to know what features would be most valuable to you and what kind price you would be willing and able to pay.
Interest in Research Survey Thank you to all of you who responded to the "Help us understand your interest in epilepsy research" survey. It is important that we understand your needs and wants prior to making development changes to the Seizure Tracker system. .
Epilepsy Research in Children This survey gauges of the epilepsy communities feelings about different aspects of pediactric reseach. You can see the results prior to taking the survey.
