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Families and researchers talk about how to make sure the child understands and is comfortable with the research process.

What Children Say About Being In a Study

Parents often try to determine what will be difficult, or what won't be, for their child. But sometimes parents and researchers get it wrong.

Depending on age and maturity, many children have a great ability to understand basic facts about a clinical study...and often want to have a say. Parents should always ask questions and get the details they need, but it is important to talk with your child and let him or her ask questions too.

But what do kids say about being in a study?

While parents and doctors may focus on drugs, or needles, or asking difficult questions, kids may be worried about staying overnight, how much school they will they miss or if there are other kinds of testing or physical exams. There may be things that scare your child about being in a study. Ask your child to talk with you about them and answer as honestly as you can. Across the board, children want very much to be able to ask their own questions...and feel at ease with the answers.

The point is, kids get it.

And because they do, it's important to listen to their concerns and questions...to give them a voice.

One thing researchers have found is that often children in clinical studies were more willing and more interested in participating in future research to help other kids. They understand that it is a charitable activity.

Whatever their point of view is, find out. More than likely, they'll have a lot to say.

"So I guess the reason why I was so comfortable with it because they told me everything off the bat and they didn't keep me in the dark about anything."
Bianca, child in kidney disease study

"And I chose to because I wanted to do pretty much anything I could to help and also help with the study to help for future generations as well."
Sawyer, child in Fabry disease study

"You bet they (kids) get to ask questions! You're surprised about the number of questions they ask...And you have to be ready to answer those questions honestly."
William Rodriguez, Pediatrician

"Bianca was having cramps and she said, I want to speak to my doctor. You know I'm a registered nurse but Bianca wanted to speak with 'her' doctor!"
Sherry, mother of child in kidney disease study

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