Epilepsy Talk

Clinical Tests and Trials — Hope for Tomorrow | January 28, 2017

I have a friend who’s tried virtually everything. Surgeries, all the appropriate meds on the market. You name it — she’s been there.

Now she’s enrolling in a program that will hopefully help her, as well as many others.

You may not know this, but aside from the 28 new neurological drugs in development, there are also countless clinical trials in progress to treat neurological disorders.

Most of them are epilepsy medical research trials for drugs, surgeries, and medical devices — the most prevalent med being tested for Partial Epilepsies and Drug Resistant Epilepsy.

Often these new therapies are investigational, which means they are not yet approved by the U.S. Food and Drug Administration for general use. However clinical trials are done under the supervision of the FDA.

And as you would suspect, participation in clinical trials offers the potential for new treatment options both for children and adults.

However, there are always risks involved, some known and possibly some that are unknowns.

Patients should consult with their physicians in considering the appropriateness of a clinical trial for their particular situation.

Here are some questions to ask your doctor to help you decide if you want to take part in a research study:

What is the study trying to find out and how long will it last?

What kinds of tests and exams will I have to take while I’m in the study? How much time do these take? What is involved in each test?

How often does the study require me to go to the doctor or clinic?

Will I be hospitalized? If so, how often and for how long?

What are the costs to me? Will my health insurance pay for it?

What follow-up will there be? What will happen at the end of the study?

What are my other treatment choices? How do they compare with the treatment being studied?

What side-effects can I expect from the treatment being tested? How do they compare with side-effects of standard treatment?

The benefits of volunteering to participate in a clinical trial include:

Participating in a research process that may lead to new therapies.

Obtaining expert medical care with physicians that specialize in epilepsy and seizures during the trial.

Learning new information about your condition.

Gaining access to new research treatments before they become available to the public.

Volunteering to participate in a clinical trial is one of the best ways you can contribute to the understanding of epilepsy.

As a volunteer, you are the most critical link in a long chain of research and testing in the development of new epilepsy solutions.

More Clinical Trial Information:

Clinicaltrials.gov Provides regularly updated information about federally and privately supported clinical research in human volunteers.

About Clinical Research Learn how experimental drugs are tested, who pays for the research and how to participate in clinical trials.

Newly Approved Drugs Find out which medications have recently been approved by the FDA.

Research Center Profiles Get profiles of research centers, organized by geographic region.

Clinical Trial Results Find easy access to information about the results of recently completed and ongoing clinical trials.

To look up a trail happening in your state click on: http://www.centerwatch.com/clinical-trials/listings/condition/62/epilepsy

 

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Resources:

http://www.epilepsy.com/clinical_trials

http://my.clevelandclinic.org/services/neurological_institute/epilepsy/research-innovations/clinical-trials

 


4 Comments »

  1. Have you heard anything about ketamine infusion ?

    Like

    Comment by Marshall Gunn — January 28, 2017 @ 11:33 AM

  2. Marshall, this is what I was able to find:

    KETAMINE INFUSIONS

    http://www.rsdfoundation.org/en/ketamine_Treatment.html

    Sounds pretty cool!

    Like

    Comment by Phylis Feiner Johnson — January 28, 2017 @ 11:38 AM

  3. I was 40, when I was at the N I H in Bethesda Maryland in year 2000, 40 years was enough of years to suffer for anyone with seizures, so I thought. Knowing all they did as far as, before the brain surgery I had, which only changed my seizure pattern, after being there under their care for 5 years, everything now is as bad or worse than back in 2000-01. In 2005, I thought to go back there, but the AGE LIMIT then as it still maybe today was 40 years old, for anyone to have any clinical trial or research study they can qualify for at the N I H. I’m 56 now & I believe people my age who’s had seizures all their life, they could care less about us, who has tried it all as far as doing most to everything THEY want to do to you. They know they are not going to keep having seizures if nothing else works, but they can control our future of our life, throw in the towel & forget about us if most of us keeps having seizures. We just wont drive, work, or do anything social to the degree, we do not matter to anyone they can not or care not to help someone end their seizures for life. They give us that STIGMA more than anyone among the public, friends/acquaintances, & some family members who think you’re not as good as they are. Again I ask,,, WHERE are the GLUTAMATE CLINICAL TRIALS from PROCESSED FOODS CAUSING SEIZURES, & WHAT ABOUT TAURINE amino acid trials for anyone where that can help balance BOTH glucose & glutamate levels in the brain, are abnormal, to where they both can cause seizures one way or another when one is lower than normal & one is higher than normal ? NOBODY investigates that, or even talks about it.

    Like

    Comment by C D — January 28, 2017 @ 12:42 PM

  4. C D — how discouraging.

    Like

    Comment by Phylis Feiner Johnson — January 28, 2017 @ 2:50 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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