So you have been asked to take part in a research study or clinical trial. Congratulations!

This can be a very satisfying experience, allowing you to help yourself now and to help others in the future. After all, without research, treatment cannot improve, and without those who take part, there would be no research. You are one of the people who helps make new breakthroughs in science and research possible.

But how do you know if you want to take part? What questions should you ask?

The researcher should answer these basic questions clearly for you. If you do not understand something that the researcher says, ask for clarification. Also ask them to explain any unfamiliar terms or words the researcher or research assistant may use. Sometimes researchers use terms that aren’t familiar to most people, forgetting they are talking to people who may not have much familiarity with research or the scientific method.

Other questions will undoubtedly arise during your discussion with the researchers. Feel free to ask anything else you may think of, or that may be of concern to you.

  • Why do you want me in your study?
  • What is the research about? How will this research help in treating or understanding my disorder?
  • What do I need to do and how much time will this take?
  • How might this study help me, my relatives, or other people with my disorder?
  • What possible risks are there to me or my relatives if I take part?
  • How will this be different from the care I am getting now, and do I have other options or choices?
  • Could my illness become worse during the study? What will happen if it does?
  • What will happen to me at the end of the study?
  • What should I do if I want to drop out of the study?
  • Is payment involved in the study?
  • Will I have to pay for the research medications or will they be provided for me (in case of a clinical drug trial)?
  • May I get back to you after I discuss this with my family/friend/case manager/doctor?

Remember to ask again if you do not understand the explanation to any question you have. And, if you forget the answers to these questions during the study, just ask them again.

It’s also perfectly okay to write down the answers so you can remember them in the future. Take a pen and paper if you’re concerned and you want to be sure you understood everything discussed.