Frequently Asked Questions | Overview
What happens after I join your Registry?
Signing up for the Registry does not mean that you are signing up for any specific study—it simply allows us to contact you when there is a study in your child’s age range. Participant records are kept confidential among researchers here at Boston Children’s. Of course, you may withdraw from a study or have your family’s contact information removed from our Registry for any reason by calling (617) 355-0400.
How and when will my family be contacted for a particular study?
Study participation is generally based on ages of children at a given time, and/or their diagnosis. When your child is eligible for a study, a researcher may contact you by e-mail or letter, and then by phone to discuss the study. If you are interested in participating with your child, we will arrange a time for you to participate.
What are study visits like?
The study visits typically last at least one hour, though some require multiple visits. Many families comment that they find participation to be a valuable experience. If we contact you about a specific study, we will explain in detail exactly what will take place during your child’s visit if you decide to participate.
Do you pay people to participate in your studies?
Some of our studies offer a small monetary compensation for your time and travel expenses. Select studies give a small toy as a way to say “thank you” to children who participate and some studies offer free parking.