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Participant Stories
“I participate because it is the right thing to do, for myself, for my children, and for the millions of people who have Parkinson’s disease. Without participation there will be no cure.” –Mike, Diagnosed 7 years
Recently Diagnosed with Parkinson's Disease?
If you have recently been diagnosed with Parkinson’s disease (PD) understanding the disease, and learning about the resources available to you, are good first steps.
Why Should I Participate in Clinical Research?
It is estimated that less than one percent of the one million people with Parkinson’s disease (PD) currently participate in trials. This is far short of the number that is needed, potentially resulting in increased costs of and delays in new treatments that could offer relief to, or improve the quality of life of those with PD. This situation is not unique to PD; the National Cancer Institute has estimated that if 10 percent of all cancer patients participated in clinical ClinicalDealing with or based on observation and treatment of people, as opposed to basic science carried out in the laboratory or in animals. trials (currently it is estimated that less than five percent participate) studies could be completed in one year, instead of the current timeline of three to five years.
There are many reasons to consider participating in a clinical trial. Clinical Trial (Clinical Study)A scientific study involving human participants to determine the safety and efficacy of new therapies or new ways of using known treatments. Many people who take part in studies believe that doing so will benefit themselves and others now or in the future. The advances in what is known about PD and medications that you may take now are available only because people before you volunteered to participate in clinical trials. Another reason to consider participation is the access it affords to leading healthcare professionals and potentially useful new therapies that are usually free of charge and are provided under high standards of care.
Joining a clinical trial can also increase your knowledge and understanding of PD and how it specifically affects you. Many people emerge reporting that they received good quality care and that the overall experience was beneficial.
Ultimately, joining a clinical trial is your decision. You must make up your own mind based upon a thorough evaluation of the information presented to you.
So, why aren’t more people participating in clinical research?
One of the primary reasons why more people with PD are not taking part in clinical research Clinical ResearchPatient-oriented research conducted with human participants (or on material of human origin such as tissues and specimens) for which an investigator directly interacts with human participants. This area of research includes: mechanisms of human disease, therapeutic interventions, clinical trials, or development of new technologies. is because they do not have the information necessary to participate. In fact, 71 percent of people with PD say that they are unaware of available clinical trials in their area.
In addition, only 11 percent of people with PD report their physician ever suggesting that they participate in a clinical trial, and only 10 percent of physicians say that clinical trials have ever been raised for discussion with their patients. Part of this lack of communication about clinical research between physicians and patients may be due to the fact that more than two-thirds (68 percent) of primary care physicians and one-third (36 percent) of neurologists are not at all familiar with clinical trials in their area.
PDtrials aims to address the lack of awareness and call for information by providing a centralized location for information about clinical research in general, as well as those PD clinical trials currently enrolling participants throughout the US and Canada.
