Researchers are always looking for new ways to treat epilepsy. They try out new medicines and other therapies in studies called clinical trials. If you have epilepsy and the treatment you get now isn't working, you may want to talk to your doctor about joining one.
"Clinical trials for epilepsy are most often done in people who are treatment-resistant," says Brandy Fureman, PhD, vice president of research and new therapies at the Epilepsy Foundation. "Someone who still has seizures despite sticking to their medicines may be a good candidate for clinical trials."
What is a clinical trial?
It tests experimental treatments to see how well they work. The treatments aren't made available to the public until the FDA approves them.
"These treatments can include new medications, new surgical devices and procedures, as well as diet modifications to reduce seizures," says Sumeet Vadera, MD, assistant professor of neurological surgery and director of epilepsy surgery at the University of California, Irvine, School of Medicine.
Why should I join a trial?
You may find a new treatment that can help you manage your seizures. But even if you don't, you'll have the satisfaction of knowing that you've helped researchers get more knowledge about treating epilepsy.
What should I expect?
You may be asked to keep track of when your seizures occur, when you take your medications, and when side effects happen.
"Volunteers must be willing and able to keep these records, either on paper or in an electronic diary, for the entire length of the clinical trial," Fureman says.
"In many trials," she says, "an eligibility requirement is that participants have been on stable medications and/or device settings or diet for weeks before the trial, and be willing to keep them unchanged throughout the length of the trial."
How much will I know in advance about the treatment that's being tested?
If the researchers say you're eligible for the trial, they'll fill you in on the purpose of the study in what's known as an informed consent process. They'll also tell you about the potential benefits and risks of taking part.
Before you start, you may need to get procedures such as "medical and neurological evaluation, medical history, blood draws, neuroimaging studies, or more extensive EEG or video EEGs," Fureman says.
How risky are clinical trials?
Testing new treatments always has some risks, but researchers make every effort to keep them low. Make sure you understand what's involved, and don't hesitate to ask questions, such as:
- Why do researchers think this approach might work?
- What are the potential benefits -- short-term and long-term?
- Who has reviewed and approved the study?
- How are study results and safety of participants checked?
- What are my short-term risks, such as side effects?
Where do I find out about specific trials for epilepsy?
Ask your doctor about how to join a trial. You can also check the websites of the Epilepsy Foundation and the National Institutes of Health for the latest information on studies.