- Anti-seizure medications
The STATUS Trial is an evaluation of the safety and effectiveness of an investigational drug in patients with continuous seizures (seizures that have little or no break between them).
Your friend, family member or loved one may be eligible to participate in the STATUS Trial if he/she:
The goal of SRSE treatment is to stop continuous seizures as soon as possible. There are no FDA-approved medications for SRSE.
When considering a clinical trial, it is important to understand that there are potential risks involved. The study doctor will be able to discuss these risks with you.
Super-refractory status epilepticus is a medical emergency in which patients experience continuous seizures (seizures that have little or no break between them) that do not stop even after standard treatment attempts in the ICU have not been effective in controlling the ongoing seizure.
Patients whose seizures continue despite the anti-seizure medication have refractory status epilepticus (RSE) and must be admitted to the Intensive Care Unit (ICU) or neurocritial care unit (NCCU) to be placed in a medically induced coma using anesthesia. The treatment team approach is to continue to try to turn off the anesthesia to see whether the status epilepticus returns. If it does, patients are placed back on anesthesia into a medically induced coma with the same or different medications.
It is important to know that treating SRSE can be challenging and the process may vary from several hours to days, weeks or even months.
SRSE can occur due to a variety of different factors. However, the most common causes include:
A seizure is a sudden surge of electrical activity in the brain like an electrical storm. Symptoms of seizures may be different each time and in each person, and most seizures do not last longer than two minutes.
Symptoms of SRSE may sometimes be related to common forms of epilepsy—a neurological condition defined by a person having at least two seizures not caused by a medical condition—but a patient does not have to have epilepsy to experience SRSE.
The below graphic shows the progression from the time a patient first experiences a seizure through multiple lines of therapy to SRSE.
If your friend, family or loved one is in SRSE, you can be their advocate.
The SRSE Brochure provides information about super-refractory status epilepticus (SRSE) and may help you understand what to expect when your loved one is in the hospital with continuous seizures.
The STATUS Trial Information Sheet offers information about the STATUS Trial. Share this information with your doctor to see whether or not the STATUS Trial may be an option.
The For Your Physician form is an informational tool designed for you to share with your physician. Bring this to your doctor to help discuss STATUS Trial eligibility.