My Perspective: Why Participate in Clinical Trials?

When you hear the word clinical trial, what comes to mind? Lab rats, test tubes, Frankenstein’s monster? No offense to Gene Wilder. Clinical trials are essential to the research community for many reasons. A clinical trial is the first step in a long series of steps that hopefully lead to breakthroughs in medical treatments and potentially effective new drugs that ultimately receive FDA approval. These breakthroughs are extremely important to scientists that may one day lead to a cure for Parkinson’s disease and other rare and chronic conditions. Clinical trials play an integral part in new discoveries and make for excellent progress to maintaining our quality of life. So, why participate in clinical trials?

Why participate?

• Science can only move forward with active participants in clinical trials.
• Your participation in clinical trials tests theories made by the research community into ideas on how best the medical community treats PD.
• In drug trials, your response to some medications can create a positive step toward new pharmaceutical applications.
• Clinical trials are very structured and are required to follow strict ethical rules that the FDA monitors.
• Clinical trials come in many different types: pharmaceuticals, medical devices, physiology and other areas.

I learned as early as grammar school in science class, in order to prove or disprove a theory, there needs to be testing. The same is true about clinical trials regarding Parkinson’s disease. It is true that these trials in the beginning are tested in a controlled environment on animals such as mice, worms, monkeys, etc. In the early first phase trials, if successful, they move on to the next phase involving humans. In the human phase, there is strict confidentiality of your participation. Your personal information is protected and only available to clinicians working directly with you. Not all clinical trials involve drugs or surgery. Some studies can be done via your home computer and take 20 minutes or less, while others are more long term and measure overall quality of life living with PD.

Why shouldn’t I participate?

• Participation in any clinical trial is always voluntary and can be withdrawn at any point.
• Not everyone is qualified. There is usually a list of exclusions and inclusions for a particular study.
• Most clinical trials have certain criteria to be met to complete the trial and noncompliance could result in involuntary dismissal.
• Some trials are “double blinded.” Which means they apply the device, drug, procedure, etc. to some participants while others receive a placebo. Clinicians do not disclose which participant receives which.
• Some trials require frequent travel to a facility and a commitment of time to achieve measurable results.

In terms of participation, there are more pros and cons that I’ve probably overlooked but ultimately it is your decision to participate in current, cutting edge science that one day may change lives and you can say that you were part of it. Some clinical trials offer compensation for your participation and some are voluntary. Each trial focuses on specific areas of PD that lead to new directions and new discoveries. That is why funding priorities for government agencies like the FDA, NIH and others is so important. Those agencies provide grants and guidelines to labs, universities and clinics all over the world, testing new drugs, treatments and procedures for effectiveness in order to improve the quality of life for people with Parkinson’s Disease and other conditions. For more information about clinical trials, contact your neurologist or go to: https://www.nih.gov/health-information/nih-clinical-research-trials-you/finding-clinical-trial