The room was starkly furnished – a desk with an old computer, a couple of chairs and an examining table - pretty typical for a basic exam room in a Canadian teaching hospital. I had done my medical training in rooms like this, developed my skills as a physician at the hands of many mentors over the years. But today was different and in some ways in my mind, more important.
Not that I didn’t have anything else to do. My list of errands, projects and responsibilities is endless. Deadlines dictate my schedule on a daily basis. But all that was put aside today. I made my way through morning traffic, what was usually a 40 minute drive took an hour and a half. Yet I wasn’t frustrated nor did I complain. I was there for my first appointment for a new clinical study, one looking at developing a new protocol for testing drugs directed at dyskinesias, those uncontrollable movements or side effects of the very drugs we use to treat our disease. Being 16 years into this diagnosis of Young Onset Parkinson’s Disease and a number of medications, I rarely qualify for many clinical studies so I was eager to participate in this particular one. After I checked in and spoke briefly with the primary investigator, I will admit that I did question my enthusiasm after the first three attempts at the intravenous line by the study nurse. But once that was in place, I settled in for the next few hours; prepared to undergo the necessary reams of clinical testing while my body was replenished and then over replaced with dopamine after hours of deprivation.
Not an easy process to undergo but one that would hopefully yield exactly the type of information required in this fight against this illness. Parkinson’s is a complex disease with a spectrum of contributing factors to consider. The causality we now recognize is not as simple as dopamine loss alone. The more complicated the disease, the more complicated the search for the solution. Naturally the breakthrough we all wish for will take longer to discover.
As a patient community we need to address what is our role in this process, this search for better treatments and a cure. And are we able to speed progress? We often hear as patients “They’re working on it…” And there is a global community of researchers and clinicians working diligently on our behalf to find better treatments and a cure but what we need to realize that as patients, we are an integral part of the equation. We need to be part of “they”. There cannot be any progress without our participation.
Let’s review the statistics. For a new neurologic treatment to get from the lab to the pharmacy shelf it can take about 15 - 30 years and 1 billion dollars. Approximately half of that time is spent in clinical trials. As a drug moves from basic research to translational studies, and through the realm of clinical research and ultimately to us, there are a number of significant hurdles that must be overcome. One of the most significant hurdles of all is clinical trial participation. Close to 85% of all clinical trials are delayed due to recruitment difficulties and a staggering 30% fail to recruit a single subject.
Even as a physician I was shocked at these statistics and the significant part of the problem that they revealed. Any delay a study faces due to difficulty in finding participants, leads to a huge waste of resources, money and most importantly time - time that we as a community can’t afford to waste.
So why is clinical trial enrollment so low? Is this gap due to apathy? Lack of accessibility? Lack of knowledge?
Apathy is not likely a major reason as surveys have shown that, in the case of Parkinson’s; the vast majority of affected individuals express some interest in being involved in clinical trials. Generally if given the opportunity, we as a community would gladly participate in studies directed at developing the treatments we seek.
Part of the problem is definitely logistical – time away from family, life responsibilities and work, transportation, money, support and so forth. But also playing a significant role is the difficulty patients face accessing appropriate studies in their own 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 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 fall to a lower priority.
That’s where innovative tools such as Fox Trial Finder (www.foxtrialfinder.org) excel. Once registered, patients and controls receive information on trials that they may possibly qualify for that is easily or reasonably accessible. In return, researchers can contact individuals through the database that fit their eligibility criteria. This type of tool bridges the gap between scientists and patients, increasing the success of trial recruitment and ultimately accelerating the development of new treatments.
There are also other databases through Parkinson Society Canada (http://www.parkinson.ca/site/c.kgLNIWODKpF/b.5714383/k.2777/Clinical_Trials_Studies_Seeking_Participants.htm) and the US National Institutes of Health (www.clinicaltrials.gov).
Regardless of the source of information, participation is vital, allowing scientists to bring their potentially ground breaking research to fruition, to complete the necessary steps to test their hypotheses, some of which may change our treatment regimens and our lives.
So as I sit here, working on my laptop as I wait for my next clinical assessment, trying not to move my arm so as not to dislodge the IV, I am filled with gratitude for the thousands of volunteers that have come before me, sacrificed far more than I ever have, to advance the science. And I look to the thousands in the future that will continue the science either through trial participation, fundraising or advocacy and support knowing that eventually there will be better treatments and a cure based on their dedication. For all those that further the progress that may someday alter the trajectory of my life and those in my Parkinson’s community, I am eternally grateful.
However what we may not realize is that we are an integral part of this process, that without us there can be no progress…
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…