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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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Do You Want to Be More Proactive with Your PD?


“When the doctor suggested that I join a trial of a new medication, I said yes in a heartbeat. It made me feel that I was being pro-active in fighting this disease.” Jonathan, 51, recently diagnosed

Clinical  ClinicalDealing with or based on observation and treatment of people, as opposed to basic science carried out in the laboratory or in animals. studies all over the country need volunteers at all stages of the disease to help solve the unanswered questions about Parkinson’s and to develop new treatments. While there are some trials that seek participants who have recently been diagnosed, there are others that are looking for participants to have been diagnosed for several years. No matter when you were diagnosed with PD, it is never too late to find 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. that is right for you.

There are a number of reasons to consider participating in a clinical study. Many people who take part in trials believe that doing so will benefit them and others now or in the future. Others participate because of access to leading healthcare professionals and potentially useful new therapies that are usually free of charge and provided under high standards of care. Joining a trial can also increase one’s knowledge of PD in general as well as help in understanding its specific effects on the individual. Once having participated in a clinical trial, many people report that they received good quality care and that the overall experience was a positive one. To view stories from people who have participated in clinical studies please see these Participant Testimonials.

Talk to Your Doctor
It is important that you bring up your interest in participating 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. with your physician so that you can discuss available studies, as well as how your participation in a clinical trial may fit within your overall PD treatment plan. Don’t be afraid to start the discussion— 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 at 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 Clinical Research 101.

Types of Clinical Studies
Many people think that clinical studies solely test a potential drug therapy,  TherapyAnother word for “treatment”. when in fact there is a wide range of observational  Observational TrialFocused on understanding more about a disease, which is critical to developing new treatments, therapies, or preventions. These trials involve no intervention, but may include genetic studies of families with a history of Parkinson's, measurement of brain or motor activity, or studies of environmental factors associated with a disease. and interventional  Interventional TrialStructured to determine whether an investigational drug, other intervention, (e.g. gene transfer, vaccine, medical device, magnetic or electrical stimulation, or surgical procedure), or new way of using known therapies is safe and effective under controlled environments. studies to consider. You may read more about the difference between interventional and observational trials here.

Some examples of the kinds of studies that may be available to you include:

  • Quality of Life
    Many individuals are not aware of the ability to participate in clinical studies that investigate of the role physical therapy, occupational therapy,  Occupational TherapyA treatment that helps people achieve independence in all areas of their lives and addresses psychological, social, and environmental factors that may hinder functioning. and exercise in furthering quality of life for people with PD. For example, there are studies that evaluate the effectiveness  EffectivenessAbility of a drug or treatment to produce a result. of a short-term occupational therapy program as well as studies evaluate the therapeutic effects of Qi Gong (Chinese exercise) on balance and fall prevention for people with PD.

    You may view a list of clinical trials that address quality of life issues here .

  • Neuroprotection
    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. is the term used to describe treatment that may slow down, stop or reverse the progression of PD. Researchers are attempting to develop neuroprotective agents for PD, as well as other neurodegenerative conditions, such as Alzheimer’s. The antioxidant selegiline  SelegilineInhibitor that increases the amount of dopamine in the brain to help control the symptoms of Parkinson's in people who are taking levodopa and carbidopa in combination (Sinemet). Selegiline may help people with Parkinson's to decrease the dose of levodopa/carbidopa needed to control symptoms, stopping the effects of levodopa/carbidopa from wearing off between doses, and increasing the length of time that levodopa/carbidopa will continue to control symptoms. is often used as an initial therapy in early PD, despite the lack of strong evidence that this medication has an important neuroprotective effect. Many people with PD use over-the-counter antioxidant vitamins, such as vitamin E, vitamin C or coenzyme Q10,  Coenzyme Q10An enzyme that improves the function of the "powerhouses" (mitochondria) that produce energy in cells and "mops up" potentially harmful chemicals generated during normal metabolism. People with Parkinson’s have low levels of this potent antioxidant in mitochondria and exhibit impaired mitochondrial function. Levels can be increased by taking CoQ10 supplements, although clinical trial results are not clear that this is beneficial. with the goal of slowing PD progression. As scientists learn more about the cascade of biological reactions leading to dopamine  DopamineA "chemical messenger" that regulates movement by assisting in the effective communication (transmission) of electrochemical signals in the brain from one nerve cell (neuron) to another. As dopamine producing cells degenerate with advancing PD, they no longer produce enough to regulate neurons elsewhere in the brain, resulting in a loss of control of movements, leading to symptoms such as slowed movements, tremor, and rigidity. cell death, it is hoped that specific cell death inhibitors will become available as neuroprotective agents. In addition, research on nerve growth factors, especially one called glial cell line-derived neurotrophic factor (GDNF), shows promise as a neuroprotective therapy for PD.

    You may view an example of a trial that is examining a potential neuroprotective agent that is enrolling more than 1,700 participants here.

  • Genetics
    While the percentage of people who inherit PD is very small, the study of genetic  GeneticReferring to a condition that is caused by a person's genes (heredity). forms of PD can assist in learning more about the more common, non-inherited forms – and thereby lead to developing better diagnosis and therapies to treat the disease. There are several studies underway that are examining the genetic factors of PD, and that are enrolling both people with PD and their immediate family members.

    You may view an example of a genetic study here .

  • Surgery
    Over many decades, through advances in surgical procedures and neuroimaging  NeuroimagingNon-invasive techniques (e.g. computed tomography, magnetic resonance imaging, and positron-emission tomography) for measuring brain structure and function that may reveal important insights into aspects of PD not directly related to biomarkers and treatment trials. techniques, modern surgical approaches have become as effective as medication at relieving some PD symptoms. The state-of-the-art surgical procedure for PD is deep brain stimulation  Deep Brain Stimulation (DBS)Procedure in which a small, surgically implanted, battery-operated medical device delivers electrical stimulation, and "turns-off" brain regions that produce Parkinson’s symptoms. (DBS), a technique that involves placing a tiny electrode deep into the brain. The electrode is connected by a subcutaneous (under the skin) wire to a battery pack implanted beneath the collarbone, like a pacemaker. For those who are good candidates for the procedure, DBS has been very effective in suppressing symptoms of PD, especially tremor.  TremorShaking or rhythmic movement, especially in the hands but in other parts of the body. Often occurs when at rest, such as in the RESTING TREMOR.

    You may view an example of a Deep Brain Stimulation (DBS) trial here.