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Get the Facts

Are you interested in participating in and advocating for clinical research?  The first step is to get the facts.

What is Your Clinical Research IQ?

It is only through clinical studies that Parkinson's treatments and medications are made available. How is your knowledge of this important topic?

 

Six Facts You Need to Know

It can take as long as 15 years to develop a potential treatment for Parkinson’s.  Find out some important facts about Parkinson's clinical research and the barriers we need to address.

 

1. Low participation delays the development of potential therapies:
  • It is estimated that less than one percent of people with PD participate in clinical trials. 
  • If more people with Parkinson's were study volunteers, more studies would be completed on time. 
  • It can take as long as 15 years to develop a potential treatment for Parkinson’s. 
  • In fact, 90 percent of all of the clinical studies conducted in the US must extend their original timelines in order to enroll the number of participants needed to complete the study. (CISCRP Website, 2009).
2. Low awareness and a lack of information contribute to low levels of participation:

(From PDtrials Harris Interactive Poll, 2005)

  • 71 percent of people with Parkinson's are unaware of available clinical studies in their area.
  • 80 percent of people with Parkinson's want more information on clinical studies and want this information to be more accessible.
  • 80 percent of people with Parkinson's state that they would participate in a clinical study if one was available in their area.
  • Close to 75 percent of physicians talk about clinical trials with 10 percent or fewer of their patients with Parkinson's.
  • People with Parkinson's learn about clinical studies most often from support groups (40 percent) and other people living with Parkinson's (27 percent).
3. People have different motivations for participating:
  • The primary motivations of people with PD for participating in a clinical study are:
    1. a doctor’s recommendation (90 percent)
    2. knowing how the research would help the community (84 percent)
    3. access to new medications (80 percent) (GfK Roper Public Affairs and Media Survey, 2008)
4. Those who participate report having a positive experience:

(PDtrials Harris Interactive Poll, 2005)

  • 80 percent of clinical study participants report that a benefit was receiving specialized medical attention during the study.
  • 70 percent of clinical study participants state that they learned more about PD and its treatment.
  • 88 percent of study participants state that they would be willing to do it again. 
5. People who participate have legally protected rights:
  • Every clinical trial must be approved and monitored by an Institutional Review Board (IRB).  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.
  • Federal guidelines require that all participants in clinical trials be given complete information about the trial before they agree to take part.  This is known as informed consent.
6. There are two types of trials: interventional and observational:
  • In an interventional trial, the investigators give the participants a particular investigational drug or other intervention, which may include a gene transfer, vaccine, device or procedure, such as surgery. Interventional studies are also looking at how activities such as exercise affect PD.
  • In an observational study, there is no intervention. Studies that examine brain or motor activity, or genetic or environmental factors, may fall into this category. These studies are often done to better understand Parkinson's, which is an important part of developing new treatments, therapies or preventions.

Order Educational Materials and Programs

Learn more about clinical research...how it works and questions you should ask...by downloading or ordering the following materials.  Print copies can be ordered by calling (800) 457-6676 or emailing info@pdtrials.org. 


(PDF thanks the Vernalis bio-pharmaceutical company as the primary underwriter of these roundtables and Teva Pharmaceutical Industries for their support.

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