Participation Considerations /

You Can Say No at Any Time

You get to say no. And you can say “no” at any time. It is your right.

No one has to be part of a clinical study. And no one should be made to feel that way. It’s about making an informed decision, your own decision—yes or no. Each decision is individual and no decision is wrong.

Clinical studies come in many different forms.

  • Some are brief; some take a lot of time.
  • Some are for children who are sick; others are for perfectly healthy children.

Parents and children say “no” for different reasons. It may be that a child will miss too many activities or school. Or it may be that the risks seem too high, or the benefits seem too low. Perhaps there is too much travel, or a parent can’t take time off from work. Whatever the reason, it is your decision. And your child will not be treated any differently if you say “no.”

Sometimes parents say “no” because they are unsure what happens in clinical studies. Be careful that your decision to say no is not based in the fear that comes from not knowing. If there is something you don’t know, ask about it. If there is something you don’t trust, talk with the research team about it. They may be able to ease your fears or explain something in a better way.

You have taken an important first step by seeking more information here. Make sure you have ALL the information you need to make the best choice for you and your child. This will help you feel comfortable that nothing will change in the care that your child gets, no matter what the decision.

"If you're not comfortable with your child being maybe seen a couple of extra times at the doctor's office—maybe they'll have to give blood, which is an uncomfortable thing for a child—then it's not for you."

Jose, father of child in heart defect study

"Being afraid is like when you do not ask the question and something happens to your child. Then you should be afraid."

Sharda, mother of child in kidney disease study