Originally Published Online

Understanding PD
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Living Well With PD
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Clinical Trials
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Why do I need to participate in clinical trials? There are plenty of other volunteers to take part. What difference does it make?
The fact is that every participant makes an impact. Close to 85% of all clinical trials are delayed due to recruitment difficulties and a shocking 30% fail to recruit a single subject. So difficulties in recruiting participants for clinical trials is a real problem, one that causes unnecessary delays in drug development, not to mention a waste of resources. A recent poll in the US revealed that less than 16% of responders have themselves or know of others who have participated in a clinical study of some sort. Without enough volunteers to participate in clinical studies, the development of better treatments and ultimately a cure will not be possible.

If I participate in a clinical trial, then I may get worse.
As with any treatment, you cannot be completely sure of the outcome. But the premise of new interventions being tested is that they will result in benefit. You may be given a treatment that is not as effective as the standard treatment or results in unexpected side effects. Likewise you may receive a new treatment that is better for your condition. Generally participants are monitored more closely than usual and at any time that you feel that your condition is worsening, you may withdraw from the study.

Participating in a clinical trial is bound to disrupt my daily life and is a huge time commitment.
There is so much variation in the logistics of different clinical studies. Some require more intensive follow up while others may be completed in a single visit. Some may even be done at home online or may simply involve sending in a DNA sample by mail.

Clinical trials always involve taking new medications.
There are many types of clinical trials. Some may involve testing a new treatment but many are observational where scientists learn about particular disease states by monitoring a group of affected patients. It may be as simple as an online questionnaire. Others may be testing an already approved and safe medication that is normally used for other health issues. There are a wide variety of options to become involved depending on what makes the most sense for you.

I don’t want to be treated poorly, like some guinea pig.
Surveys of patients following their participation in clinical research reveal that for the most part, it is a positive experience. And that the majority of participants feel they were treated with dignity and respect. As patients we are a valuable part of the research process and the research community recognizes that contribution.

I don’t really want to be the “test” subject for a brand new, unproven medication that they know nothing about. It’s dangerous and too risky.
The drug development process is heavily regulated and monitored by the country’s health authority. By the time a drug is tested in humans, researchers have already had to show scientific evidence that it will likely work and is safe. The largest number of participants are needed for phase 3 trials and by that time the intervention or treatment has already passed safety studies and has been shown to be effective. But regardless any treatment or clinical research has a certain degree of risk and it is important that you be comfortable with that possibility.

If I participate in a clinical trial then I won’t receive the same quality of care that I currently have with my doctor.
In most situations, you continue to receive ongoing care from your own physician, making sure they are aware of your involvement in a particular study. And for the most part, those enrolled in a research study often undergo closer monitoring and evaluation than usual.