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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.
Clinical Research 101
What is a Clinical Trial?
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. (also called medical research, clinical ClinicalDealing with or based on observation and treatment of people, as opposed to basic science carried out in the laboratory or in animals. research or a clinical study) is a study intended to help answer specific questions about a treatment by studying its effects in people. Clinical trials are designed and conducted by scientists and medical experts, who invite people to participate in testing the new therapy TherapyAnother word for “treatment”. or treatment for conditions such as Parkinson's disease. Parkinson's DiseaseA chronic, slowly progressive disease of the nervous system characterized by the combination of tremor, rigidity, bradykinesia and stooped posture, among other symptoms.
Why Should I Participate in Clinical Research?
There are many reasons for a person with Parkinson's disease to consider participating in a clinical trial. 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 Parkinson’s disease and medications that you take now are available only because people before you volunteered to participate in clinical trials.
How Do I Participate?
Finding the right clinical trial can be challenging and requires research and patience. Before participating in a clinical trial Parkinson's disease, talk to your neurologist, NeurologistA physician skilled in the diagnosis and treatment of diseases of the nervous system. family members and people with Parkinson's who have participated in clinical trials.
What Are My Rights and Responsibilities as a Participant?
According to federal regulation, every clinical trial in the U.S. must be approved and monitored by an Institutional Review Board Institutional Review BoardA committee of physicians, statisticians, researchers, community advocates, and others chosen by an institution to initially approve and periodically review research projects involving human participants. Federal law requires this to ensure protection of participants’ safety, rights and welfare. (IRB) IRBA committee of physicians, statisticians, researchers, community advocates, and others chosen by an institution to initially approve and periodically review research projects involving human participants. Federal law requires this to ensure protection of participants’ safety, rights and welfare. . An IRB is an independent committee of doctors, community advocates, and others, mandated to ensure that the clinical trial is ethical and that the rights of study participants are protected.
Educational Resources
In addition to the information provided via this website, the PDtrials initiative offers print educational materials that may be helpful to you and others who wish to learn more about Parkinson's disease and 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. and/or consider participating in a clinical trial.
