Interested in participating in a research study?
Deciding whether to participate in a research study is a very important decision because it can involve time, effort, responsibility, obligations and even risks and discomfort to you.
You should get as much information and ask as many questions as you can before making a decision whether to participate. Take your time and think about it!
- Talk to your family and friends about the decision.
- Participating in a research study or clinical trial is completely voluntary.
- You should NEVER feel pressured or expected to participate in a research study.
Participating in a research study is not the same thing as getting standard medical care.
Some of the important differences between research and standard medical care are:
- Many times the drugs, devices, or treatments being studied in research are unproven, which is why they are being tested in a research study.
- You should not assume that you are going to benefit by participating.
- In many research studies, you will not benefit directly.
- Many times the risks and discomforts with a drug, device, or treatment are not fully known.
Ask about whether there are costs involved with participating and/or whether your insurance or medical coverage will cover the costs.
If you decide to participate in a research study and then change your mind, you can stop participating at any time.
Questions to consider before participating in a clinical trial
- Why is the research being done?
- What will be done to me as part of the research?
- How will I benefit from the research?
- Could the research hurt me?
- What will the researcher do with my information?
- Will the research cost me anything?
- Who pays if I’m unexpectedly injured during the study?
- How long will the study last?
- What happens if I decide to leave the study early?
- Who should I call if I have a question about the research?
Additional considerations before enrolling in a research study
- Do I feel comfortable receiving a study treatment whose risks and benefits are somewhat unknown?
- Will the study require that I be hospitalized? If so, for how long?
- Can I take my regular medications while I am in the study?
- If I enroll in the study, will I be able to find out my test results?
- If someone else in the study has an unexpected and severe health problem or side effect that may be related to the study, will I be told about it?
- If I think the study treatment helps me, will I be able to get the same treatment after the study ends?
- How many visits and how much time will the study require? Will I be required to miss work? Can I commit to that and am I able to make all of the required visits?
- Will I need to keep getting tests done after I stop taking the study drug?
- If am I very sick and have exhausted all other treatment options, would I rather receive care aimed at making me live comfortably and help me stay at home instead of being in a clinical trial that might cause side effects and require me to stay in the hospital?
- Am I satisfied that my decision is right for me, and not a decision that is being made to please the study doctor or someone else?