Seizure Success® and You!

Clinical trials and your role in developing new therapies for epilepsy...

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.

What is 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.

Things to consider:

  • The treatments for seizures will not improve without patients participating in research.
  • Clinical trials help us understand if a promising new medication or device is safe.
  • Participating in a research study may give you access to a therapy not available to others with epilepsy.
  • Clinical trials not only research medication, they can also focus on disease prevention and quality of life.

For more information on clinical trials, please talk to your doctor or use the Trial Finder to identify a trial appropriate for you.

Featured Epilepsy Studies

The following are epilepsy studies that apply to particular groups within the Seizure Tracker™ population. Click a title to expand its details.
TrustTSC
The TrustTSC study is exploring whether treatment with an investigational medication (ganaxolone) has the potential to reduce the frequency of seizures associated with TSC in children and adults.

Currently, there are a limited number of treatments approved specifically for individuals living with tuberous sclerosis complex (TSC). Antiseizure medicines that are available to treat seizures associated with TSC may not work for everyone, may stop working over time, or may have to be stopped because of side effects.

If you or your child have been diagnosed with TSC and have inadequate response to your existing regimen for seizure control, there may be a clinical study for you.
Tuberous Sclerosis Alliance
The TSC Biosample Repository stores samples of blood, DNA, and tissues from individuals affected by TSC that scientists can use in their research. The samples we collect are linked to clinical data in the TSC Natural History Database. These samples and linked clinical data help researchers conduct experiments to find biomarkers of TSC, test potential drug treatments, and determine why TSC is so different from person to person.

Implemented in 2006, the TSC Natural History Database captures clinical data to document the impact of the disease on a person’s health over his or her lifetime. More than 2,000 people with TSC are enrolled in the project across 18 U.S.-based clinical sites and the TSC Alliance. The TSC Alliance provides funding to participating clinics to perform data entry, monitors the integrity of the database, and makes data available to investigators to answer specific research questions and identify potential participants for clinical trials and studies.
Description: Study design is a Phase IIb prospective multi-center, randomized, placebo-controlled, double-blind clinical trial. The goal will be to enroll 80 infants with Tuberous Sclerosis Complex who are less than 6 months of age prior to the onset of their first seizure.
Some of the listings above may be sponsored content. All listings will pertain to some part of the Seizure Tracker™ population. Feel free to reach out to us if you think there is a research study that should be featured here.

Clinical Trial Finder
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Do I need to talk to my current doctor about a clinical trial for me?
You can. There are also people for every clinical trial that are available to answer any questions you may have. Their contact information can be found in the trial’s ClinicalTrial.gov listing.
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