What will you and your child be doing as part of a research study?
Your child will also play a series of computer-based brain games that will test things like their ability to recognize faces, their memory, and other cognitive and emotional abilities. We will also measure things like their heart rate, blood pressure, and breathing rate while they are doing the games. At different times during the testing session, we will ask your child to spit some saliva into a test tube to measure different hormone levels.
In some of our studies, we will also ask to take pictures of your child's brain using an magnetic resonance imaging (MRI) machine at a local hospital. MRI scans do not involve any radiation and you and your child will be able to see some very cool images of their brain. If your child feels comfortable, we may also ask to draw a small amount of blood to measure parts of their immune system. Before getting a real MRI, your child will have a chance to practice laying still and getting used to the sounds an MRI makes in our MRI simulator.
If you and your child think you might like to take part in a study, we will answer all of your questions and give you more information over the phone first before you decide if you would like to participate or not. All of your and your child's medical and personal information will be kept safe and private.
What should I tell my child about the visit?
It's common for children to wonder or even worry about new experiences related to testing and situations that sound like going to the doctor or hospital. They may worry that they will have scary or painful procedures done to them when they come for a visit. You can tell them not to worry as we will not be doing any painful procedures to them or to you. If your child agrees, drawing a small amount of blood can be uncomfortable for some children but this will be done by and expert with lots of experience who will make your child as comfortable as possible.
They will be meeting and telly friendly, caring, safe, and interested people about who they are, what they like to do, and about their thoughts and feelings. To help your child prepare for their visit, you can show them the pictures of the friendly adults whom they will be meeting, working, and playing with. Here is a link to the OUR TEAM page.
Activities include playing memory games where they have to remember shapes, find faces in a crowd, pay careful attention to birds and fish to take their pictures as fast as they can, and counting and math games. The games are designed to adjust to your child's abilities. The paper and pencil tests are a lot like those they may have done in school or daycare. There will be breaks and snacks available. The adults they will be working with are encouraging and excited to see your child show off their abilities and many children will find this a very rewarding experience.
Diagnosis and disclosure to your child
We know that not all children are aware of their diagnosis and that parents make that decision for a variety of reasons. We respect parents' wish regarding disclosure. Just let us know. We can also guide you to resources regarding disclosure to your child if you are interested.