Should You Try a Clinical Trial?

Participating in a clinical trial may be daunting at first—experimental treatments, changing your routine, and going into the unknown can be scary. But it can also be a very positive experience that offers participants access to promising new treatments not yet available on the market. Think of the antiepileptic drugs you take now that weren’t available a decade ago; those newer medications wouldn’t be available to you today if it wasn’t for clinical research.

Consider the benefits
People have a variety of reasons for participating in clinical trials. Some do it to help others, while others do it to improve their own conditions when existing treatments aren’t working for them. Individuals who continue to experience seizures or who have a difficult form of epilepsy may benefit a great deal from participating in a clinical trial, says Gregory Bergey, M.D., a practicing epileptologist and director of the Johns Hopkins Epilepsy Center.

“When you sign up for a clinical trial you’re getting very in-depth, focused patient care, and you can often skip your routine outpatient visits,” says Dr. Bergey. “A clinical trial is very hands-on because the physicians and researchers need to know everything that’s going on while you’re using the treatment.”

So, if you want to participate in one, where should you start?

Talk to your doctor
If participating in a clinical trial interests you, discuss it with your doctor. He or she can help you determine whether signing up for a clinical trial is a good fit. Let your doctor know why you’re interested, and cover the pros and cons.

Pros:

• You gain access to new therapies
  Clinical trials give participants the opportunity to try groundbreaking therapies that may work better than standard therapies.

• You’ll help others down the road
  Your participation contributes to scientists’ understanding of epilepsy and helps them advance the development of things like more targeted treatments.

• You can opt out
  You should be able to leave a clinical trial at any time. There’s no obligation to stay for the duration of the trial or to do anything that makes you feel uncomfortable.

Cons:

• You may experience side effects
  Any treatment under investigation may cause unknown side effects. If you do participate in a clinical trial, it’s important to alert your doctor and the researchers to anything new or unusual.

• You need to show commitment

  You may face some logistical issues, like traveling to the hospital or facility where the clinical trial is taking place for weekly check-ins. You can drop out at any time, but some level of commitment to the study is helpful.

• Paperwork, paperwork, paperwork
  If you do get involved, you’ll most likely have to fill out and sign a lot of forms. Be sure to read everything carefully with a friend or family member, and discuss any concerns with your doctor.

You can visit clinicaltrials.gov, a service of the NIH, and search through it to see which trials have recently finished, which are active, and which are currently enrolling. You can also search studies by topic. Who knows? You might find a whole new appreciation for science.

Written exclusively for EpilepsyAdvocate.com.