There are many devastating neurological illnesses for which there are no cures as of yet as is the case for PD. However, the future is bright since in the last 3 decades have seen many new discoveries in the field of neuroscience which have led us to a greater understanding of such complex illness as PD. Yet, despite all the advances there are nearly 2 million people living with PD in this country. Many of whom still face difficult challenges daily due to lack of specific treatments for various PD non-motor symptoms.
Part of the problem is difficulty recruiting appropriate patients to even fill clinical trials. It is believed that roughly 80% of trials are delayed due to being unfilled while 30% never even get off the ground. The result is that lack of participants in research trials only leads to slowing down the progress towards a possible cure. For those that do participate only one in four reach completion.
The great news is that you have the power to change the future of research. Subsequently, aiding in improvement of quality of life and discovering breakthroughs from which all could benefit.
So, how can you help?
…by playing a part in Parkinson’s research. Saying Yes! to becoming a volunteer.
You can participate in research as a patient or as a control…….
Now that you have decided to take control and become a research participant, you may be asking yourself the following questions:
I want to participate in a trial but, I am not sure if I qualify?
• First, you must know that there are different types of trials. Some are only interested in collecting data via surveys etc. these often times can be done from comfort of your home. Other studies are interested in evaluation of biomarkers, genetic abnormalities, or discovering other risk factors via laboratory. These do not require taking specific medications and maybe a onetime only test as well but may have a degree of invasion in order to draw blood, spinal fluid, tears, etc. There are also those which involve the evaluation of devices for instance to track tremors, gait instability and so on. Finally, there are the drug trials which everyone thinks about when speaking about participating in a clinical trial.
• Once you have understood the different types you can then actively seek out information regarding the various types you might be interested in.
• The best way to do this is talk to your physician. Other options is contact national organizations for referral to research centers or ask your peers at support groups and conferences.
How do I approach my doctor about participating?
• Begin by asking your physician if he or she thinks you might be a good candidate for participation in a trial. Ask the reasons why or why not? If he/she say yes, then ask if they have a particular trial in mind. If they are not actively doing research would they be willing to refer you to a center that does.
• If they are not the primary investigator would they work closely with researcher and would they still continue treating you or release care to another.
How do I choose the best one for me?
• Assuming you opted to volunteer in a drug trial you must find out the stage of the trial. Is this a drug that is in phase 3 awaiting to see efficacy vs. placebo or another treatment? Or is this an early stage trial where safety and tolerability is only being addressed. Expectations must be clear from the start on both ends in order to have the best outcome.
It is important to remember that by definition a clinical TRIAL is an EXPERIMENT in which the outcome (answer) is not yet known!!!!
As I stated previously, since there are different types of clinical drug trials it would serve you well to discuss in detail with your physician what your participation in a particular trial would mean for your disease state not just in the present but also in the future. This is crucial to remember because circumstances change and disease burden also changes over time (increases) which could impede continued participation in case of a long trial or may even preclude you from obtaining standard of care later on when disease advances, such as having DBS when participated in certain gene therapy studies. Furthermore, is also important to consider that in some instances future participation in other trials may be limited.
Therefore, before making a decision you must always take into account ALL of your current circumstances be it social, financial, physical, emotional, and other comorbidities (e.g. depression).
If your health is precarious like mine you can still participate in certain types of drug trials. For instance, participation in phase 4 drug trials in which drug results are already known but require further information or its being used for a different purpose than its intended original use could be something worthwhile.
In the end, the best way to maximize your success and achieve a positive outcome for you is to consider these things before you engage in any trial:
• Consider your goals and those of the studies, are they in sync?
• Are the expectations realistic?
• Never participate to please your doctor…that will only lead to heart break when results don’t yield what you hope for….
• Consider your physical limitations and capabilities along with those of your caregiver.
• MOST IMPORTANT- YOUR WELL BEING comes FIRST!
Don’t forget research is a TWO-WAY street OPEN communication is VITAL…..let your clinician know your concerns and also what interest and issues you have to better fit a study that suits your needs…..
all rights reserved by Maria De Leon