There are many reasons that the vast majority of clinical trials for Parkinson’s disease (among other conditions) are delayed or never even begin due to recruitment issues. Some of these reasons are logistical in nature – occupational and family commitments, monetary and travel constraints or lack of support. We know that apathy or insufficient interest is not a significant issue as surveys have shown that most of us affected by Parkinson’s are interested in participating in the medical research that will bring us that much closer to more effective treatments and what we all want – a cure. But we’re still left with the fact that fewer than 10% of us actually participate in clinical studies.
Other than those reasons mentioned, a bigger part of the problem is that there is often a lack of knowledge of appropriate studies given our age or stage of disease 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). This site, which began in 2000, provides information on publicly and privately funded studies in a number of diseases for the general population as well as medical and research communities. It includes trials that are being conducted in 187 countries around the world.
Specific to Parkinson’s disease, the most comprehensive database where you can register to receive information about appropriate trials is Fox Trial Finder (https://foxtrialfinder.michaeljfox.org). Fox Trial Finder is an innovative tool that serves as a “matching service” pairing potential enrollees with the research they may qualify for based on the demographic and brief health history that is initially collected as part of the patient profile. To register to be part of this service in no way obligates you to participate in a particular trial or any study for that matter. It simply supplies you with potential research opportunities that are accessible and may be of interest to you. It is then up to you to get in contact with the study coordinators to further pursue any options if you choose to do so. In return, researchers can contact individuals that fit their eligibility criteria through the database using a private messaging service. The anonymity of registered volunteers is maintained throughout this process until they choose to disclose.
It is also important to note that many Parkinson’s disease studies require a control group, that is a group of individuals with similar demographics to the experimental group but are without the disease. That is why those without Parkinson’s – friends and family or anyone motivated to help – should also be encouraged to look into what studies they may also qualify for through these same resources.
The Internet has made the world accessible and these online tools are an example of that, bridging the gap between scientists and patients, increasing the success of trial recruitment and ultimately accelerating the development of new treatments.