Once in a Study /

Leaving a Study

If your child is in a study and you feel you need to leave, that is your right. You may leave the study at any time, for any reason. You will still get your regular care, and no one will be upset with your decision. The decision to withdraw may be hard; it may come from the parents or it may come from the child, but as the case with every other part of a study, parents have control and can make the decision to withdraw if they feel that is best.

Talk with the team

Remember to talk with the research team if you want to leave a study.

Maybe you are moving to another state and think you cannot attend the study visits. The research team may have a solution that would allow your child to continue in the study. And if you must leave the study, the team will want to make sure that your child is safe when you do so.

Depending on the study, leaving can be very simple with few requirements and easy transfer back to regular care. But in other cases, it may mean that your child has to be monitored until they are safely off of a study drug or until regular care can be resumed.

There are some important things to consider when thinking about withdrawing from a study and, as with every part of a study, it is important to ask questions.

Here are some things you should consider finding out:

  • After we leave the study what will happen to my child’s study data?
  • Will my child be able to get the medication or treatment he or she was taking in the study?
  • What should I do with materials I was given for the study?
  • Can I still contact the study team?
  • What happens if my child’s care is being paid by the study?
  • Will my doctor get the study health records?

Remember: While it is absolutely okay to withdraw, make sure you know what happens next. When you leave a study, there are many pieces that may need to be addressed for the safety of your child.

"Actually I think I do that every now and then too [read the study materials], just to make sure I want to stay on it. And I can get off of it whenever I want, which is actually a really good deal."

Sawyer, child in Fabry disease study

"...in some cases, if your child got a drug or something else, and they'd like to continue monitoring your child because they just want to make sure that he or she will be okay, it's probably a good idea to let them do that."

Tasmeen Singh, Research Coordinator