Questions I May Have About Participating in Research

Research helps everybody! By becoming involved in research, you can learn about different areas of study, meet new people, and gain experience. Through research, you are helping researchers discover new ways to understand issues that we would like to learn more about. You are also usually compensated (receive money or a gift) for your time because we understand that your time is valuable.

Only select members of the research team will have access to your information, like your contact information or your survey responses. However, your information is confidential. So, when you become involved in a research study, your personal information is coded in a way so that your involvement in the study and your name/personal information cannot be linked. Everyone on the research team has to go through training to make sure they understand how to protect and respect your confidentiality and rights as a research participant.

If you are under age 18, some studies ask that you get your parent or guardian’s permission and some do not. In the State of Pennsylvania, you can see a doctor confidentially (without your parent’s permission) for reproductive and sexual health care at any time or for mental health concerns if you are 14 and over. So some studies do not require you get your parent’s permission to participate in research if the study is related to one of those things. Other studies might require you to get your parent or guardian’s permission. You may always ask a research assistant if you have questions. If you are over age 18, you do not need to get your parent or guardian’s permission to participate in research, but you might want to get a supportive adult’s opinion anyways on whether or not they think it is a good idea for you to participate.

Research involves: a team of researchers which includes the Primary Investigator (PI) who is the head researcher, the Research Coordinator who supports the PI and works with the data, and the Research Assistant who generally recruits participants. The participant(s) are also involved in the process, as these are people like you who are participating in the study!

You have the right to:

• Informed consent - You have the ability to provide your permission to be a part of a study.  It also provides you with information about the study and an explanation of the possible risks and benefits of the study.
• Voluntary participation - Your involvement in a research study is completely voluntary.  You are free to stop participating at any time of the study and for any reason.  Your decision to decline participation will not affect your involvement in future studies, should you choose to participate in other research.  If you decline to participate in a study it will not impact any clinical care you would receive.

There are several types of research! There is clinical research, which could involve lab work and testing biological samples. There is social research, which could involve observing the way people behave in a social environment, or you might take a survey about things that you have experienced in your life. There is experimental research which could involve testing the effects of an experimental group against a control group. For example, there might be too acne creams that might work, and you are trying one versus the other. And the list goes on!

The IRB stands for the Institutional Review Board. They are a committee established to review and approve the research involving human participants. They make sure our research follows guidelines set forth by the government and the university that our research follows all federal (the national government), institutional (the university), and ethical guidelines. In simpler terms, they make sure that the research we conduct is safe for you!

The risks of any research study that you participate in will always be stated within the informed consent. If you ever have any questions about the risks of a study that you are participating in, and would like the researcher to explain them further to you, always ask!

The cost of participating is different for each study. Some studies might have your insurance cover certain costs, while others will not. In some cases there might be a travel cost associated with your participation. Many studies will compensate you for your involvement.

For a glossary of common research related terms, visit the Children and Clinical Studies website.

Log on to Pitt+Me. There is a list of studies that you can choose to participate in depending on your age group. If you have any questions about joining the registry, there is a “CONTACT US” tab that is extremely helpful!