Tips to Help You Prepare
When you are considering whether to join a clinical trial, feel free to ask as many questions as you need. Before the clinical trial begins, you will meet with the study's cystic fibrosis doctor or research coordinator to learn more about the trial.
Here are some tips to help you prepare:
- Write down your questions ahead of time and bring them to the meeting.
- Bring a family member or friend to help you feel more comfortable when talking with the CF doctor or research coordinator. They may ask other questions that will help you as you decide.
In this video, Dr. Joseph Pilewski, an adult pulmonologist and CF doctor at the University of Pittsburgh Medical Center, talks about what to consider when joining a clinical trial.
Part of the informed consent process is comprehension, so if you don't understand something, ask! The research team expects that you will have questions for them, so don't worry about bothering them or asking a “stupid” question. If you are not sure what to ask, here are some suggestions:
- What is the purpose of the clinical trial?
- Why do researchers think that this particular CF drug or treatment might work?
- Who is paying for and supporting the study?
- Who has reviewed and approved the study?
- Who will be in charge of my care?
- Will the trial benefit me or others?
- How long will the study last?
- What will my responsibilities be if I participate?
- What kinds of tests will be involved?
- Do I need to stop any of my current CF medications?
- How do the possible risks, side effects, and benefits compare with my current treatment?
- Can I talk to other people who are participating in the study?
- Will I be compensated for my participation in the clinical trial and for my travel expenses?
- What is the time commitment for me?
- Will results of the clinical trial be given to me and, if so, when?
- Whom should I communicate with during the trial: the research team, my CF care team, or both?