What to Expect as a Research Participant
Your decision to participate in research will help make healthcare better for people like you. Once you are on board, there will be a few things you can learn and do to make the research process run smoothly.
Before the Study Begins
Before you enroll as a study participant, several things must happen. First, you will likely speak to a clinical research coordinator or someone else from the study team. Their job is to make sure you understand the study and want to participate. They will also make sure the study is a good fit for you.
A study coordinator will lead you through a step called informed consent. This is where they explain the study and answer your questions. They will go over what you can expect during the study, what you might be asked to do, and potential risks and benefits to you. You decide during this process whether you want to participate or not. You can say no at any time.
Sometimes this is a long process. You might have many questions to ask at this time. Sometimes, for studies with very low risk like surveys, you might consent simply by completing the survey.
You might also go through a screening to determine whether the study is a good fit. This could be as simple as answering a few questions. It could also involve giving the study team access to medical records or coming in for an exam or blood draw. It is important to be as honest as possible with the study team during the screening process.
If the study team finds you cannot participate in their study, it just means that one study is not a good fit for you at this time. There are many studies taking place, and you can look for others that might be a better fit.
During the Research Study
Once you learn about the study, decide it is a good fit, and agree to participate, you are enrolled in a study. You will want to save a copy of your consent and your study contacts somewhere you can easily find them in the future.
It is very important to follow all instructions from the study team. They designed the study to keep you as safe as possible and to learn as much as possible.
If you have questions or are worried about something, ask your study contacts. Be as honest as possible with the study team. They can help you through the study process.
You can stop participating in a study at any time, for any reason. It is important to let the study team know if you decide to leave the study. They might ask you to do things to be sure you are safe, especially if you are stopping any medicine or treatment. If they do, follow their instructions to leave the study safely.
After the Research Study
Before research ends, find out how you can learn about results. If you are receiving medicine or treatment, find out how you might safely stop these medicines or treatments, or whether you can still get them.
Keep your consent form and any paperwork from the study team in a safe place. If you have questions about the study in the future, this will help you contact the right people.