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One of the first things to consider is why you would like to participate in a clinical trial. Here is a list of just some of the reasons you might consider volunteering.
You may be motivated by program related benefits. Oftentimes, these benefits relate to the clinical services that are available to study participants. Participants may receive physical exams, blood work, electrocardiograms (to test the heart), and other services that normally cost hundreds of dollars. These services typically are provided by highly-trained people who are among the top practitioners in their field, so the level of clinical care is high. While the procedures performed are study study-related, and this is different from what might be done in a regular doctor’s office, the participant can obtain copies of reports to take to one’s own doctor for review. This can facilitate good patient care and it is encouraged.
Some people want to participate in a clinical trial because they are looking for a new treatment. Since clinical trials involves the testing of investigational new drugs in development, study participants often gain access to medications that they otherwise would not be able to obtain. In some cases, this can be highly desirable (e.g., if someone has a serious or life-threatening illness and they have exhausted all known therapies).
Many people are motivated purely by altruism. Specifically, they want to do something selfless to help humankind. For example, one recent participant in one of our diabetes studies indicated that she was motivated to join because her father suffered terribly and passed away as a result of complications related to diabetes. She wanted to do something to prevent other families from going through the same kind of heartache, even though she did not suffer from diabetes herself. This is altruism.
Most clinical trials offer compensation for participation. The rates paid for participation usually depend on what is called the “subject burden.” That is, how much time or effort is required on the part of the research participant or “subject” in order to be in the trial. If the subject burden is low, a low payment can be expected, perhaps as low as $25 or $50 for a visit. However, if the subject burden is high, as it is for many Phase I studies, payment can be high – as much as several hundred or several thousand dollars. It is important to note that the amount of payment is a very important consideration for scientists and all parties involved in administering a research study. The goal is to set a fair payment rate, but not one that is “coercive.” This means that the financial reward can’t be so great that it is considered a pressure to participate.
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