Clinical Trials and Epilepsy: Innovation that Matters

This post is part of the Epilepsy Blog Relay™, which will run from June 1, 2018, to June 30, 2018.  Follow along!

*Disclaimer* Before participating in any research outside of your normal treatment plan, please consult your doctor. Do not sign up for anything without a doctor’s consent.

If you’re like me and have been living with Epilepsy for more than 20 years, you know that therapies and medication have come a long way. As technology and the advancement of patient care continues to move forward, a greater need grows for Clinical Trials, participants, and staff. They often get a bad wrap due to the huge stigmas and misconceptions placed on them. In order for us to get the therapies needed to survive this illness, we have to be willing to participant in and learn more about these trials. If we change our outlook on clinical trials, we as patients could be the ground-breakers in developing a cure. So let’s take a look at the world of Clinical Trials.

What are Clinical Trials?

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans.  Studies also show which medical approach works best for certain illnesses or groups of people (nih.gov). These types of studies are so important when developing new therapies, especially with epilepsy.  With there being over 40 different types of seizures, it is important that we don’t get a one size fits all type of treatment.

There are typically three phases of clinical trials research. People with epilepsy may be asked to join in studies at any one of these phases.

  • Phase 1 – looks at the overall safety of the treatment, and sets safe dosages to be used
  • Phase 2 – looks at safety and early signs of the effectiveness of a treatment in people with epilepsy
  • Phase 3 – compares whether the new treatment added to a standard therapy controls seizures better than the standard therapy used alone  (http://www.epilepsy.com)

Clinical trials can study:

  • New drugs or new combinations of drugs
  • New ways of doing surgery
  • New medical devices
  • New ways to use existing treatments
  • New ways to change behaviors to improve health
  • New ways to improve the quality of life for people with acute or chronic illnesses. (Learn more)

Why not be apart of this? I see it as, I’m living with this condition anyway, so why not help others and myself along the way?

It could go back to that word we know all too well, STIGMAS. Stigmas can hinder a lot of patients from even trying to get into a trial. No, participants are not guinea pigs, they are essentially the missing link.  If you think about it, we are already “guinea pigs”. Who has tried only 1 drug or treatment to treat their epilepsy? It’s rare. Usually, we go through 2-4 medications before finding the right one or combo that does its job.

No, you don’t have to be extremely sick to participate. There are trials for perfectly healthy people as well. Often participants wait until things have gotten extremely bad to look for trials when we should be getting connected at the very beginning. The medications provided could be some of the best that has yet to hit the market and you my friend could be the one that changes the tide for others. Yes, there are risks just like the daily doses we take. But instead, you have a team working with you that wants your input. That makes you a partner in your care. That’s something we strive for every day. This is why research and communication with your physician are so important and works hand in hand.

Could the stigmatization against the innovation of Clinical Trials be holding us back from a possible cure for epilepsy?  I want to break through the stigmas so that we can get more patients involved, move forward to better quality care and get the meds or technology needed to successfully diagnose and treat epilepsy.

Whit, where can I find these trials and learn more? I’m glad you asked. Below are my favorite portals to search for Clinical Trials. Remember to consult your physician if you see something that may benefit you. Also, don’t ever be afraid to bring it up to your doctor if trials were never mentioned to you.

Epilepsy Foundation of America – Clinical Trials Portal

Clara Health – Find a Study

NEXT UP: Be sure to check out the next post by Emily at https://livingwellwithepilepsy.com.

TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET. 

With Love,

Whit

cf.epilepsy@gmail.com

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