Here are some basic steps you and your child will take when deciding to participate in a research study.
1. Find a research study
2. Contact a research team member or your care team
When you find a study, contact the team member listed as the contact. Or ask your care team to help you find a research study. Any of these people can help you decide if joining a research study is right for your child.
3. Schedule a screening
If your child is a candidate for a study, you may be asked to come in for a screening visit.
At the screening, your child will be assessed to make sure they match the requirements for who can take part in the study. The screening might include:
- Review of your child’s medical history
- Questionnaires or surveys
- Blood tests or other medical tests
4. Learn what it means to participate
Before your child enrolls in the study, a research team member will explain the study to you and your child. This process is called informed consent. A team member will explain:
- The purpose of the study
- What happens during the study
- The potential benefits and potential risks
- How long the study will last
- That your child can stop participating at any time. It will not affect your child’s usual medical care.
- That taking part in the study is your choice. It is voluntary.
This is a great time to ask questions. Use our list of questions to ask as a guide.
5. Decide if the study is right for your child
After the study team has answered your questions, you and your child will be given time to decide if you would like to participate. Remember, it is OK to decide that you don’t want to take part in the study.
If you decide to participate, you (the parent or guardian) will be asked to sign a consent form. Your signature on the form confirms that you understand the study’s purpose and potential risks and benefits and that you give parental permission for your child to be in the study.
Children give “assent” when they agree to take part in research
Children also have a say in making a decision to join a study. Typically, children who are age 7 or older can agree or not agree to take part in the study. The child is given a form in simple language to read and sign showing that they agree to be in the study.
For children younger than 7, a member of the research team will explain the study in simple language and ask the child if they want to participate or not.
6. Enroll in the study
After the consent process, your child is enrolled in the study. A person from the research team will:
- Give you a copy of the signed consent and assent forms (if applicable)
- Tell you how to contact the research team
- Help schedule your study appointments (if applicable)
- Tell you what happens next
For more information about participating in research, read the National Institutes of Health’s guide about children and clinical studies.