When asked about the state of medical research and if there are any promising developments for future management of Parkinson’s disease, I often answer with the standard “They’re working on it.” And there is a worldwide community of academics and researchers devoting a great deal of time and attention to finding better treatments and a cure for what is currently incurable. However what we may not realize is that we are an integral part of this process, that without us there can be no progress.
Clinical trials are necessary to see how effective or safe certain treatments, interventions or diagnostic tests are in humans. They are also important in gaining information about the disease, how it manifests and the clinical course that it takes.
For a new neurologic treatment to get from the lab counter to the pharmacy shelf it can take decades and well over a billion dollars. Approximately half of that time is spent in clinical trials. Yet close to 85% of all clinical trials are delayed due to recruitment difficulties and a shocking 30% fail to recruit a single subject. So 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 those of us that have to wake up each day facing the burden of Parkinson’s 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 this disease.
There are many factors that likely contribute to study recruitment difficulties and lack of interest is not a substantial part of the problem. 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% actually participate. Why is that? It’s a simple yet complex issue. Simple in that in order to be successful, research requires participants. Complex in that those numbers are very difficult to reach.
Part of the problem is logistical. Issues like transportation, taking time off work, household and caregiver responsibilities, lack of funding, all serve to make enrolling in a clinical study that much more difficult. Accessibility may also 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.
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.