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Participant Stories
“I feel like there is hope, great hope, more hope now than ever before.” –Peggy Willocks, Diagnosed 14 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.
What is PDtrials?
Parkinson’s disease (PD) has been called the most curable neurological disorder. In the last decade, there has been an explosion of new research ideas for Parkinson's and other diseases of the brain. These discoveries need to be tested 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 before they become available to the public. Yet, it is estimated that less than one percent of the one million people with PD currently participate in trials. This is far short of the number that is needed, and this lack of participation 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. potentially translates in the delay of these important new treatment and therapies.
PDtrials is a collaborative initiative of Parkinson’s organizations dedicated to increasing education and awareness about clinical research. Central to this effort is providing information to help people with Parkinson’s learn more and make informed decisions about participating in clinical studies.
One of the primary reasons why more people with PD are not participating in clinical research is because they do not have access to information about clinical research. In fact, seventy-one percent of people with PD say that they are unaware of available clinical trials in their area and 80 percent state that they are dissatisfied with the amount of clinical research information available and their access to it.
While vast majority of physicians support their patient’s decision to participate in clinical research, only 11 percent of people with PD report their physician ever suggesting that they participate 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. 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 by providing information about clinical research in general as well as those PD clinical trials currently taking place throughout the US that are seeking participants. The PDtrials.org website is a core component of the PDtrials initiative. This website provides comprehensive, up-to-date information about Parkinson’s studies for people living with PD, their families and caregivers, as well as news on Parkinson’s clinical research.
Read more about the issue of the lack of public participation here.
