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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

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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.

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Have You Been Newly Diagnosed with PD?


“As a ‘virgin’ (someone not yet on medication), I was a prime candidate to join a trial, but I balked at participation. I needed time, first, to accept my status as a PD patient. A year later, I was ready. I'm in a trial now, and feel the wait was right for me.” Susanne, 59, one-and-a-half years after diagnosis

If you are newly diagnosed with PD and have yet to start medication (pharmacologic  PharmacologicRelated to the science of drugs including their origin, composition, therapeutic use, and toxicology. therapy)  TherapyAnother word for “treatment”. there are specific research studies that you may wish to consider.

These studies need de novo  De NovoLiterally Latin meaning “from the beginning”, generally refers to Parkinson’s patients who have not yet begun medication for their disease. participants (those not yet on drug therapy for their PD), who can be the most difficult to find as many people with PD begin medication before they become aware of the potential to 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. Some of these trials focus on neuroprotection.  NeuroprotectionRelating to mechanisms within the nervous system that can slow or stop the progression of PD by protecting neurons from cellular damage caused by the disease. In these studies, researchers are trying to determine if a certain compound might offer protection to dopamine-producing cells and thus help to slow or stop the progression of the disease. Volunteering in such a trial ensures that you play a vital role in the research necessary to ultimately develop effective neuroprotective therapies for people with PD.

While your doctor will recommend a course of treatment that seems most appropriate to your stage and symptoms, keep in mind that you have a say! As someone who is newly diagnosed with PD, this is the time to discuss with your physician potential clinical  ClinicalDealing with or based on observation and treatment of people, as opposed to basic science carried out in the laboratory or in animals. trial opportunities and how they fit within your overall PD treatment plan prior to beginning PD medications. This is important as only 10 percent of physicians say that clinical trials have ever been raised for discussion with their patients and only 11 percent of people with PD report their physician ever suggested that they participate in a clinical trial.

In addition to talking with your doctor, you may find it helpful to speak with family members and other people with Parkinson’s who you can meet online through listserv groups or local support groups.

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.

For more information about deciding to participate in a clinical study please see Do You Want to be More Proactive with Your PD? and Clinical Research 101.

For further resources on 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. participation, visit our Educational Resources page.

For further resources on Parkinson's, visit our Additional Resources page.