For Research Participants
Thank you for your interest in research! Many areas of research, both behavioral and biomedical, are possible only if people agree to be studied as part of the research. Those who volunteer to participate in research as human subjects help to benefit others, as well as society at large.
Participation in research is voluntary; that means you don’t have to join a study. However, if you have joined a research study, are thinking about joining a study, would like information about current studies, or have questions about a study you have joined, we hope the following “Frequently Asked Questions” will be helpful.
What do I do when…
- I have signed a consent form for a study and now I have more questions. What should I do? On page 1 of your consent form, there is a list of the researchers with their contact information. Questions that are related to a particular research study should be directed to these researchers.
- I signed a consent form to be in a study but I’ve changed my mind and I don’t want to do it. I don’t want to call the researcher because they might try to convince me to continue. What should I do? First, remember research is voluntary and you do not have to join or stay in a research study unless you want to. If you aren’t comfortable calling the researcher or the research staff, call or email the UW Human Subjects Division: 206-543-0098 or firstname.lastname@example.org. We will help you. This includes informing the researcher on your behalf about your decision.
- I received a letter about joining a research study. I don’t want to do it and I don’t want anyone to call me about it. What should I do? The letter should have a phone number and/or and email address for you to use, to let the researcher know your decision. If you can’t find a phone number or email address, you can call or email us: 206-543-0098 or email@example.com. We will need some information from the materials you received so we can identify the study and help you.
- I am already in a research study but I don’t like what’s going on. I tried to talk to the research nurse but that wasn’t helpful. I still have concerns. What should I do? Call or email us: 206-543-0098 or firstname.lastname@example.org. We will help identify the study in question and work with you to resolve your concern.
- I saw a flyer in the library for a study saying that they will pay $800 for each study visit. I need the money but I want to know whether this is a “real” study or whether it is a scam. What should I do? Call or email us at 206-543-0098 or email@example.com. We can help you find out whether the study is “real” and approved by the UW. If it isn’t, we may be able to help you find out who is doing the research.
- I want to know if the UW is doing any studies about a certain disease or condition. How do I find out what studies are going on? There are several websites that list studies looking for participants:
- For research studies at the University of Washington: Research Participant Link
- For all clinical research in the U.S.: http://www.clinicaltrials.gov/
- For a user-friendly interface to ClinicalTrials.gov built by Vanderbilt University: https://www.trialstoday.org/
- For cancer related research studies:
- How can I donate my brain/body to research?
- I was in a study years ago and want to know the results. What should I do? If you have the contact information for the researchers who lead the study, call them first. If you don’t have their contact information, call or email us at 206-543-0098 or firstname.lastname@example.org. We will need as much information as you can remember in order to help you find the researchers who may be able to answer your questions.
- My consent form says an “Institutional Review Board” approved the study. What is an Institutional Review Board and what does “approved” mean?
An Institutional Review Board (IRB) is a small group of people who review human research studies to make sure they are done properly according to federal and state laws that protect the human participants. The research can’t be started until the IRB has approved it. The members of the UW IRB include a mix of scientists, healthcare providers, and a non-scientist. Most of them are part of the UW, but there are always some who are from the community and who have no connection with the UW. At the UW, all human subjects research that is covered by the federal regulations is reviewed by an IRB before it starts.