CLINICAL TRAILS; The Benefits and Risks
By Barby Ingle
I have been living with chronic diseases for the past 20 years. During this time, I have participated in several clinical trials. Some were big, some small, some were online only, some were produced by medical professionals. I know that there are some risks and benefits to the trials and know that they are not right for everyone. If you are considering participating in a clinical trial be sure to ask enough questions prior to getting involved as a participant. Be sure to read all the available information on the trial. They last different lengths of time, some require travel, some involve placebo versions. Make sure you know what you are getting into.
The benefits of a clinical trial include access to promising new treatment often not available outside the clinical-trial setting. I personally know of quite a few trials here of medications that are already available in other countries but only available through trial in the United States at this point. There is always a hope that the trial treatment be more effective than the standard approach currently being employed by providers. When trials are being conducted, there is close monitoring, advice, care, and support by a research team of doctors and other health care professionals who understand your disease or condition. A lot of times outside the trial in normal clinical settings the understanding of our conditions complexity is not fully understood or the provider doesn’t have the time to give a close watch to everything we are experiencing. I often say be your own best advocate. Participating in a trial can give you the opportunity to play an active role in your own health care and gain a greater understanding of your disease or condition. It also helps society out at the same time. Even if you fail the trial, it can benefit the disease community you are in because it helps add to scientific knowledge. People who take part in trials are vital to the progression of treatment. Participating in clinical trials is not right for everyone. It can be a positive or negative depending on how we look at it, but we do get the opportunity to be the first to benefit from a new method being tried.
The negatives can induce the time it takes to do the trial. It may involve travel. Even extra doctor appointments or hospital stays. Since the trial is not known yet there may be unpleasant, serious or life threatening side effects to experimental treatments. But you are monitored more closely during this time, and have cutting edge research providers watching out for these potential hazards.
If you are interested in doing a clinical trial you can check out places like the NIH site, CureClick, Clara Health and other sites to see what options for your condition exist. There is a medical ethics committee that oversees the trials to ensure all participants are appropriately treated and monitored during the trials. If it is not right for you at any time you can leave the trial knowing that you must do what is best for you first. Finally, remember to read all consent documents and detailed information on the trial that are available. It is important to know what to expect as a participant and the potential benefits and risk associated.
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Barby has participated in multiple clinical trials, is on the CureClick Board of Advisors, and is part of the Clara Health Breakthrough Crew. More information about Barby can be found at her website.
