Questions to Ask the Research Team

When your child is facing a serious illness, it can feel overwhelming.  Your health care provider may suggest a clinical trial or other research study if your child meets certain requirements (is eligible).  

Meeting with the research team may feel stressful, but it can be a helpful time to ask questions and get the information you need to decide whether to participate. The team will explain the study’s purpose, potential benefits and risks, what is involved, expected outcomes, and how it may affect your child’s care.  

This process of learning about the research study and deciding whether to take part is called informed consent. Depending on where you live, where the study takes place, and your child’s age, either you or your child may be asked to sign a consent form if you choose to participate. Deciding whether participating in a research study is right for your child starts with asking the right questions. Talk to the research team about when your decision is needed. In some cases, you may have only a short time to make a decision.  

The information below will help you prepare for conversations, suggest questions to ask, and identify support resources.  

Prepare to meet with the research team

Preparing to meet with the research team can help you feel more confident and make the most of your time. You do not need to do everything on this list. Use what feels most helpful for you and your family.    

Here are some tips to help you prepare: 

• Learn a little more about different types of research, including clinical trials. If you’d like, you can look up information on your hospital’s website to learn about the research studies. 
• Know that your child has rights as a participant in clinical research, and the research team will review these with you. 
• Consider what you and your child value and whether you may want to take part in research.  
• Think about short-term and long-term goals for your child’s treatment and what matters to you in their care. 
• Take a family member or friend along for support. This support person can help you remember questions and take notes during the meeting. 
• If your primary language is not the same as that of the research team, be sure to ask for a medical interpreter. 
• Before the meeting, write down your thoughts, questions, and any concerns you may have. Feel free to ask these questions and share your concerns openly. 
• Write down the answers you get so that you can review them later. If you don’t understand something, ask the research team to explain it in a way that you can understand. 
• Be sure to ask any new questions that come to mind during the meeting. 

Remember, the research team is there to guide you and answer your questions every step of the way. Bring your list of questions and concerns to the meeting. Here are some questions you may want to ask:

Questions about the research study

• What is the purpose of the study?  
• What type of clinical trial is this? 
• Why is my child eligible for this trial? 
• Who has reviewed and approved the study? 
• How long will the study last? 
• Who is funding the research? 
• What information about my child is shared and with whom? 
• How is my child’s information kept private? 
• What happens if we decide we don’t want to continue participating after the study begins? Can we leave the study at any time?  
• How and when will the trial results be reported? Will we be told about the results? 

Questions about experimental treatments

• How is the study or treatment approach different than the usual treatment they would get if they were not in the study? 
• Are there any experimental treatments that have not been tested before in children or for this condition? 
• How will the researchers decide which treatment my child receives? 
• Will my child get the standard treatment, an experimental treatment, or both?  
• Will I know if my child is getting an experimental treatment? 
• If my child takes part, what will participation involve? 
• What are the potential risks and benefits of participation? 
• What other treatment options are available if we choose not to participate? 
• If we leave the trial, how will my child get any needed treatment? 

Questions about medical care

• What kinds of therapies, procedures, and tests will my child have?  
• What is the usual (standard) way this condition is treated or managed?  
• Will my child be able to take their regular medicines or other treatments while in the study? 
• How will my child’s condition be monitored? 
• Where will my child get medical care and follow-up visits during and after the study?   
• Who will oversee my child’s medical care? 

Questions about possible risks and benefits

• How might this study directly benefit my child? 
• How is the study monitored for results and safety? 
• What risks or side effects might happen due to the treatments or procedures? Which side effects are the most likely? 
• How will side effects or potential complications be managed?   
• How do the possible risks and benefits of this trial compare with those of other treatment options? 
• How might this trial help other children with this condition in the future? 

Questions about daily life

• Will my child need to be in the hospital if they participate in this study? 
• How might being in this study impact my child's daily life? 
• Can I talk with caregivers of other children in the study? 
• If my child participates, how often will we need to come for extra treatments, tests, or procedures? 

Questions about costs 

• Will I have to pay for any part of my child’s care, such as tests or medicines? If so, what should I expect? 
• What is my health insurance likely to cover? 
• Who can help answer questions from my insurance company or health plan? 
• Will there be any travel, housing, or childcare costs to consider during the study? 
• What costs will be reimbursed? 

Getting support as a study participant

Your hospital or clinic may have a research participant advocate who can talk with you about the research study. They are not part of the research study team. They can talk with you about concerns and questions related to the study. They will share your input with the research study team and the Institutional Review Board (IRB), which reviews every new clinical research study before it begins and protects people who take part in research. 

There are health care providers and medical staff who may be able to help you during this process, including: 

• Your child’s care team  
• The research study team 
• Another doctor outside who can give you a second opinion 
• Patient navigators or care coordinators  
• Social workers 
• Psychologists 
• Child life specialists 
• Chaplains and spiritual advisers 

You may also consider contacting patient and caregiver groups that focus on your child’s condition. They may connect you with resources or support services.   

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