Participating in Research: Benefits, Risks, and How to Get Involved
Participating in Research:
Benefits, Risks, and How to Get Involved
If you have a chronic, debilitating disease with no known cure, taking part in a clinical trial might be something you’d like to investigate. Researchers test new treatments in laboratories and on animals first, but eventually, treatments need to be tested on people. Clinical trials that are conducted according to strict protocol are the best way to determine whether a specific treatment is safe and effective in human beings.
Before you agree to participate…
Before participating in a trial, you have to go through a process called “informed consent.” The researchers, doctors and nurses involved in the trial explain
- The purpose of the trial
- How long it will take
- Exactly what procedures you’ll have to take part in
- Who you’ll be working with during the trial
- The risks and benefits of the drug or other treatment being tested
When you’re in the informed consent phase, feel free to tell the researchers that you’d like to have someone with you. A lot of information will be coming your way, and it’s helpful to have someone else with you who’s listening to the same things you are. Take a notebook with you as well, so that you can write down important points. And before you go, write down any questions that are on your mind. Sometimes people forget some of their main questions when they actually sit down with the researchers.
Some common questions might include:
- Has this new treatment been tested on people before?
- What kinds of tests will be involved?
- How will being in the trial affect my day-to-day life?
- Who will pay for the treatment?
- What kind of follow-up care will I get after the study?
Typical benefits of being in a trial
In general, these are the common benefits people experience from being in a trial:
- You have access to new treatments before they’re widely available
- You typically receive high-level medical care at a leading healthcare facility
- You have the potential of helping other people who have the same condition you have
These are some of the common risks:
- In some trials, side effects may be unpleasant or even life-threatening
- The treatment you’re testing may not be effective
- You’re likely to spend more time than you normally would going to medical appointments, taking trips to the study site, paying attention to complex medication dosage requirements, etc.
For many people, there can be a sense of satisfaction simply from knowing that when you’re in a clinical trial, you’re making an important contribution to medical research. But you should never take lightly a decision to be in a trial. You’ll need to find out as much as you can about any trial you’re thinking of participating in. Read all materials the trial researchers give you. Ask them how extensive your time commitment will be and whether you’re likely to suffer from any side effects. Talking with your own doctor about the trial’s risks and benefits to you.
For information about which clinical trials are available, their locations and what else is involved, visit:
The National Institutes of Health/ClinicalTrials.gov
CenterWatch; ClinicalTrials.gov (National Institutes of Health); W. Weiner, L. Shubman, A. Lang. Parkinson’s Disease, a Complete Guide for Patients and Families. Johns Hopkins University Press, 2001.