WHAT TO EXPECT- 22Q Study

What will you and your child be doing in the study?

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The study involves 2 sessions of about 5-6 hours each, including breaks for lunch/snacks. During their visit at the SCAN Lab, your child will be asked to do paper and pencil tests about how they have been feeling, thinking, and acting over the last couple of weeks. You will also be asked to answer questions about how your child has been thinking, feeling and acting. We will also be asking parents about how they are feeling and acting too. Many of these tests are like those your child does at school or during assessments that your family and child may have done before.

Children 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, you and your child will be asked to spit some saliva into test tubes.

Children will also have pictures taken of their brain using an 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 pictures of his or her brain. If your child feels comfortable, we will also draw a small amount of blood to measure parts of their immune systems. We even have a special practice MRI simulator that helps children and even adults get used to the sounds and experiences of having an real MRI.

 

If you would like to find out more about taking part in the study and helping us learn about mind and brain development in children like your own, please contact us. All of your medical and personal information will be kept safe and private.

If you and your child would like to take part, we will answer all of your questions and give you more information over the phone first.

 

What should I tell my child about the visit?

It’s common for children to 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 you. If your child agrees, drawing a small amount of blood will be done by an expert who will help make your child as comfortable as possible.AshleyHR_small.JPG

They will also be meeting and telling friendly, caring, and interested people about who they are, what they like to do, and about their feelings. To help prepare your child for his or her visit, you can show them the pictures of the friendly adults whom they will be meeting, working, and playing with (available on on Our Team page).

Activities include playing memory games where they have to remember shapes, a game where they have to find faces in a crowd of faces, paying careful attention to pictures of birds and fish to take their pictures as fast as they can, and another counting and math game. The games are designed to adjust to your child’s age and abilities. The paper and pencil tests are a lot like those they may have done in school or day care. There will also be breaks and snacks available. The adults that they will working with are encouraging and excited to see your child show off his or her abilities and many children 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.