Written by Shea Roesel, clinical research coordinator I at Volunteer for Health at the School of Medicine
As a clinical research coordinator with the Volunteer for Health (VFH) office at Washington University School of Medicine over the past 15 years, I have noticed that each participant’s situation is distinctive and the motivation to participate in a clinical trial and what they perceive as benefit from participating may stem from a variety of personal, family or health related reasons.
Many of the participants coming through the VFH office realize that participating in a clinical trial is a rare opportunity to make an important contribution to humanity. Some of these participants may have seen a close family member or friend suffer or die from illness. They do not want others to suffer from the same condition so they do what they can to help. They know that medical discoveries that come from clinical research benefit everyone for years to come, and may one day even lead to a cure.
Some participants may have a disease that can’t be controlled effectively with medications that are currently FDA approved and marked for patient use. Participating in a clinical trial may allow a patient the benefit access to a therapy or medication that could potentially help their disease or elevate some of their symptoms.
An equally important motivation is personal family history. Several participants have a strong family history of a disease such as cancer or dementia. These participants benefit because they are monitored for signs of the disease before full blown disease onset. This monitoring is beneficial because it helps relieve some of the anxiety patients have of the uncertainty of what their future may hold and allows them to play an active role and feel more in control of their own health.
Additionally, a few participants are prompted to participate in clinical research for monetary reasons. Compensation is provided by many clinical trials to reimburse participants for their effort, time, and travel. Many participants take time off work to participate and compensation can help to alleviate some of the financial burden. Compensation amounts very from trial to trial, and some trials do not provide any compensation at all.
Should I Think About Participating In a Clinical Trial?
The American Cancer Society website states that this is one of the toughest questions for many people with cancer to answer. When trying to decide, first ask yourself some basic questions. Some of these questions may not have clear-cut answers, but they should help you start thinking about some important issues. Each person’s situation is unique, and each person’s reasons for wanting or not wanting to take part in a study may be different.
- Why do I want to take part in a clinical trial?
- What are my goals and expectations if I decide to take part? How realistic are these?
- How sure are my doctors about what my future holds if I decide to participate (or not to participate)?
- Have I considered the chance of benefits versus the risks?
- Have I considered other possible factors, such as travel, time, and money?
- Have I considered my other possible options?
Right now, more than 1,500 clinical trials are underway at Washington University School of Medicine. For every clinical trial, researchers need volunteers to serve as patients. People who are healthy, and those who have medical conditions, are needed from every ethnic and age group.
Interested individuals can call VFH at (314) 362-1000 or register with the VFH website. Registrants are always free to say no, and may remove their registry entry at any time. The personal health information participants provide is kept in the strictest confidence and is in compliance with federal HIPAA privacy laws.