Should I Participate?

Clinical trials allow for discovery of better treatments...

As the morning sun pours into my bedroom, I slowly swing my legs over the side of the bed but the pain in my cramped feet make it nearly impossible to navigate to the bathroom. Like myself, many people with chronic illness awaken every morning to face a day full of challenges - different symptoms perhaps but challenges nevertheless. Eventually I reach my destination and my body gradually begins to cooperate as the handful of pills I have swallowed start to take effect allowing me to continue with my already busy day. But as I start into my morning routine, I begin to wonder how long these medications will work. Already the doses have escalated over the past twenty-one years since my diagnosis of Young Onset Parkinson’s Disease. How much more of an increase in these same medications will be possible until they no longer are able to manage the progression of my disease or the side effects become more unbearable than the disease itself?

What the millions of us affected with a chronic, disabling disease need is quite simple yet unbelievably complicated – better treatments and ultimately, a cure. We often think of the search for these elusive endpoints as being far removed from us when in fact, we need to be an integral part of the process. The answers are essentially, in all of us.

A clinical trial is a term we have all heard and it encompasses many different types of protocols, some observational while others are interventional. We know that these studies are a necessary part of research but how significant is their role? To put it into perspective, for a new treatment for a neurologic disease to get from the lab counter to the pharmacy shelf, it can take anywhere from 15 to 30 years and about 1 billion dollars of investment. Approximately half of the time it takes for that treatment to reach patients, is spent in clinical trials. Yet this is the point at which problems arise due to significant recruitment issues. Close to 85% of all clinical trials are delayed due to recruitment difficulties and a staggering 30% fail to enroll a single participant. An incredible waste of resources and most importantly time – time that those of us facing the burden of chronic disease would rather spend fully functional and productive. Fully able to contribute to our families and community in a way that one can only do when not in the depths of disease.

Undoubtedly, participation in clinical trials requires a certain amount of selfless commitment but it can also be a rewarding experience as it allows those that dedicate their time and energy to be a part of something much larger; something that has the potential to make a life-changing difference in the lives of many. Although the need for participants in clinical studies is fairly well known, certainly to those of us in the chronic disease community and to some degree in the general public, there continues to remain a significant shortage of those willing to enrol. Is this discrepancy due to apathy? Lack of accessibility? Lack of knowledge?

This is likely a multifactorial issue. Apathy may play a small role but is perhaps not a major contributor. Surveys have shown, in the case of Parkinson’s Disease for example, that the vast majority of affected individuals express some interest in being involved in clinical trials yet less than 10% are. Why is that? Accessibility may be an issue as is not meeting the study criteria. But more significantly is that there is often a lack of knowledge of appropriate studies within a specific, convenient geographical area. Although we rely on our physicians to keep us functional and manage our medical needs, there is often a lack of dissemination of information regarding local ongoing trials unless of course the physician is intimately involved with a particular one. And that is not to put blame on the physician. There are so many other pressing issues that must be addressed during the patient encounter, that medical research and recruitment often fall to a lower priority.

There are however resources that help to bridge the gap between the research community and potential participants, many of which are accessible online. In Canada, Health Canada’s Clinical Trial Database is a source of information for Canadian clinical studies that involve human pharmaceutical and biological drugs (http://www.hc-sc.gc.ca/dhp-mps/prodpharma/databasdonclin/index-eng.php). In the US, this type of information can be accessed via The U.S. National Institutes of Health (http://www.clinicaltrials.gov) and specific to Parkinson’s Disease, the most comprehensive database at which you can register to receive information about appropriate trials, is Fox Trial Finder (https://foxtrialfinder.michaeljfox.org).

There is much exciting research going on globally but that research cannot be translated into treatments that will benefit patients unless clinical trials are filled and we work together to promote and support our scientists.That means for those of us that are suffering with life-altering disease, even more time without better treatments and the cure we desperately need. More time struggling with daily disability. More time not living to our full potential. More time living with the burden of our disease. But through our collective dedication to resolve this issue, the day will come when we will no longer have to face these challenges and when those that follow will not have to embark on this journey at all.