What is PDTrials.org?
The Michael J. Fox Foundation for Parkinson's Research has joined seven leading Parkinson's groups and the National Institute of Neurological Disorders and Stroke (NINDS) to lead a nationwide effort to accelerate the development of new treatments for Parkinson's by increasing awareness and participation of the patient community in clinical research.

The campaign, called PDTrials.org, was initiated because an increasing number of new therapies for Parkinson's will soon need to be tested in clinical research and because current levels of participation are insufficient. The disparity between the projected need for the number of patients in trials and the actual level of participation could result in severe delays in the availability of new treatments. We aim to ameliorate this problem through:

• A comprehensive Web site listing Parkinson's clinical trials at www.PDtrials.org.
• Regular print and e-bulletins with trial listings and information.
• Educational brochures for patients, families and professionals.

The concept of PDTrials.org grew from patients themselves through an online, grassroots network of people with Parkinson's called the Parkinson's Pipeline Project.

For further information, and to receive a free brochure on Parkinson's clinical trials, please contact the information request line at (888) 823-8889 or visit www.PDtrials.org.

What are clinical trials?
New treatments and therapies for treating diseases are discovered in the laboratory by "basic" scientists. Our understanding of potential promising therapies is refined in extensive pre-clinical tests. Before being made generally available to patients on the open-market as prescription medication or treatments they are tested in clinical trials. A clinical trial (also called medical research, clinical research or a clinical study) is a research study designed by scientists and medical experts who invite people to participate by testing the new therapy or treatment to help answer questions about the potential new treatment. The purpose of a clinical trial is to test the safety and efficacy of new treatments. Clinical trials are an essential and necessary component of the scientific research process. Put simply, without clinical trials no new medications or treatments will become available.

Clinical trials conducted in the U.S. are regulated by the U.S. Food and Drug Administration (FDA), and overseen on multiple levels by medical experts and committees comprised of physicians, scientists, and patient and community representatives whose role is to protect patients from unnecessary risk. Clinical trials are conducted and carefully monitored in a series of phases. Each phase being refined to test the safety, tolerability, and effectiveness of the potential treatment.

Why do Parkinson's clinical research studies need volunteers?
Over the past decade, the National Institutes of Health (NIH) have devoted significant federal dollars to making substantial scientific discoveries and advances in the neurosciences. This investment has resulted in a recent explosion of new research insights about Parkinson's and other diseases of the brain. At last count, there were over thirty studies taking place in research centers across the U.S. for new Parkinson's treatments and therapies.

However, a potential crisis in Parkinson's clinical research is looming: the number of people volunteering to participate in Parkinson's clinical trials is not keeping up with the growth in available trials. This means that some trials are being unnecessarily delayed because of difficulties in finding patients who are willing to participate.

That's why Parkinson's disease advocacy groups have decided to initiate a community-wide effort to educate and inform people with Parkinson's, their families and caregivers about Parkinson's clinical trials, and to increase the number of people with Parkinson's who are willing to learn about the studies and consider participation. The goal of the campaign is to bring scientists, medical researchers and study participants together to help make new treatments available, more quickly, to the people who need them.

Are there different types of clinical research?
Researchers are interested in studying many aspects of Parkinson's disease to try to solve it. There are different types of research studies depending on the type of research question. For example, a researcher trying to identify what causes PD is likely to study genetic or external environmental factors that may have triggered an individual to develop PD. Other researchers study how Parkinson's affects different people and how it changes over time (these are known as natural history studies). Finally, in order to assist people living today with Parkinson's, researchers need to ask: How can we treat this condition or improve the lives of people affected by it? Different types of treatment can include changing behavior, performing surgery or taking medications. When research involves testing a treatment is it is called a clinical trial but these other types of research are just as important to help us answer questions and to find a cure for Parkinson's.

How do I find out about a clinical trial near me?
Finding the right clinical trial can be challenging and requires research and patience. There are many additional print and Web resources available for you to locate and access information about ongoing clinical trials.

To find out about trials taking place near your home, you may also contact major research centers in your area, such as hospitals, universities and clinical research centers. Ask to speak with a clinical investigator to find out if they are conducting any studies for Parkinson's. You can also ask your neurologist about the trials that he or she may know about.

What questions should I consider before joining a clinical trial?
Before participating in a clinical trial, talk to your neurologist, family and friends. Make a list of any questions or concerns that develop in these conversations, and take these to the study coordinator to answer. Below is a list of suggested questions that will help you understand more about the trial you have been invited to consider:

1. What information is available about the treatment from pre-clinical studies?
2. What are the known side effects and what is the risk of new side effects emerging?
3. Will I have to stop taking my current medications?
4. How will the study staff work with my primary physician to keep him or her informed about my care?
5. How much time do I need to commit?
6. Will I have to travel?