Health and medical research leads to improved knowledge and treatment for all sorts of health conditions. If you’ve ever received a vaccine or taken an antibiotic, you’ve benefited from medical research!
Why should I participate?
Participating in research can be a great way to help others and improve the health of future generations. Depending on the study, you may learn more about your own health, or receive a beneficial treatment.
People who volunteer to participate in research play a valuable role in advancing science.
Learning about research studies
Finding out about research studies is a lot easier than it used to be! Of course, we recommend visiting Healthy Mind Lab’s Join a study! page to learn about our studies. Other ways to find research studies:
- Join Washington University’s Volunteer for Health Research Participant Registry
- Check out Washington University’s StudySearch
- Visit Researchmatch.org, a federally funded project to help match researchers with potential volunteers
- Search for conditions or treatments you may be interested in on Clinicaltrials.gov, a public directory of medical studies being conducted all over the world
Deciding to participate
It is always your choice whether or not to take part in a research study.
The research investigator and staff have an obligation to explain what is involved in the study and answer any questions you may have. This process is called informed consent and is documented on the informed consent form.
Informed consent forms should contain enough information about the study to help you decide if you want to participate. If not, ask the study staff! Once you have signed up, at any point you may withdraw from the study for any reason.
Here are some questions you should consider when making your decision.
Some studies are observational – meaning the goal of the study is to learn more about a particular condition or process.
But many studies involve some type of treatment. These treatments may be experimental or they may already be FDA-approved.
Some studies may be testing an approved drug or device for a new condition or treatment of a condition that already exists. For example, testing a medication that is normally used to treat depression to see if it can help improve memory.
There are potential risks and benefits to all treatments, and to receiving no treatment at all. You may or may not be able to receive the study treatments outside of the study.
Talk to your healthcare provider about studies that involve medical treatment, and make sure you are comfortable with any treatments that are involved.
Many treatment studies are randomized controlled trials.
This type of study compares the effects of 1 or more treatments to a placebo or control condition. A placebo is a substance that has no therapeutic effect.
You and the other study participants would have your treatment assigned randomly, like flipping a coin or rolling the dice. You would not get to choose which treatment to try.
In some studies, your treatment assignment might be kept a secret from you and the members of the research team who are evaluating you. This is to keep the expectations about the treatment from influencing the measurement of its effects.
All research studies will involve some type of assessment or testing. This may be a brief health questionnaire and a blood draw, or you may have more to do.
Some of the tests may be similar to testing that your doctor might order for your health, but others may be conducted just for research.
You’ll want to understand the potential risks involved with any testing and procedures being conducted in the study. You can ask about the purpose of the test or procedure at any time.
Generally, tests measure either the safety of the treatment or the effect of the treatment.
Your time is valuable! Make sure you understand how much time you’ll spend participating in the study at any initial and follow-up visits. Consider how far you will need to travel for those visits when making your decision, and whether you will have other expenses, such as childcare.
You’ll also want to consider how the length of the follow-up period fits into your life and plans. For example, you may not want to get involved in a study with a 2-year follow-up period if you’re actively planning to move out of state in 6 months.
Some studies may have costs associated with the testing and treatments involved, while other studies cover the costs of all testing and treatments. Make sure you understand whether you will be responsible for any costs associated with the research study.
Research studies often provide some financial compensation for your time involved. You’ll want to understand whether compensation will be provided. If compensation will be provided, you may want to ask:
- how much you will be paid
- when you will be paid
- what information you need to give to be paid (such as address or SSN)
- what format you’ll be paid
We hope that participating in research is a rewarding experience, and that financial compensation helps you make time for it.
I’m involved – now what?
You can always ask more questions as you think of them!
You can always change your mind about participating by letting the research team know that you’d like to withdraw from the study. It’s important to tell them that you’d like to withdraw in case there are special procedures to stop the study treatment safely.
If you’re enjoying your time as a research participant, spread the word to your friends and family, and ask if there are other studies you can get involved in!