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Clinical Trial Rundown

By Jennifer Bradley, Staff Writer

(Page 2 of 3)  
 

Pros and Cons

Many people enjoy participation in clinical trials because they feel compelled to the greater good. They believe this trial could help them and also those who will be diagnosed with Parkinsonís in the future. They realize that the medications and treatments available to them currently are only because others volunteered for previous clinical trials.

In addition, there is a great benefit to being treated by leading health care professionals. A loved one will be surrounded by the cutting-edge new treatments, at no cost. They will gain knowledge and understanding about Parkinsonís in general and how their body responds to treatment.

Being a part of a clinical trial can change the schedule of a loved one and most likely, a caregiver too. Depending on the nature of the trial, a loved one with Parkinsonís may need extra help with transportation to and from multiple appointments.  A trial participant still works with their primary medical provider as well as the study team. It is a great opportunity to learn and receive care many others with the same disease will not have access to.

A Caregiverís Role in a Clinical Trial

Communicating During the Study

When your loved one is a study participant, communication is essential. Make sure to talk often about their feelings throughout the study.  Be aware of what your loved one is thinking and feeling.  You should discuss feelings when they arise, while appreciating the need for personal privacy.  Remember to always respect your loved oneís ability to make their own decisions.

Recognize that negative emotions can arise for both you and your loved one. It is OK for either of you to feel sad or frustrated. Expressing these emotions is, in fact, healthy and normal.

Other ways to keep communication flowing smoothly:

  • Encourage your loved one to keep a journal. You can also discuss your loved oneís diary entries for the study or help your loved one to fill out the diary.

  • Set aside time each day or week to talk about the most recent study visit.

  • Learn basic relaxation techniques to keep tension and stress low.

 

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