New APP - Detailed Overview
Your family will be welcomed to the MIND Institute by the APP Research Staff who will take you through the consent process and answer any of your questions. Upon enrolling in the study and prior to this visit, you will have received an information packet about the study, along with questionnaires to complete and bring with you to the first visit.
You and your child have been invited to participate in a research study to understand the different types of autism based on behavior and physiology. By separating out different types of autism we hope to find the cause(s) and better treatments for each type. As part of the study, we will sample all the main behaviors and developmental domains involved in the core behavioral presentation of autism. The combination of testing data and parent completed questionnaires will provide a thorough sampling of behaviors in the three clinical domains affected by autism: social reciprocity, communication and language, and restricted and repetitive behavioral repertoires. Testing includes confirmation of your child’s diagnosis and evaluation of your child’s language, handedness, and attention skills. You will be given questionnaires to complete that provide detailed information about your child and family. Because young children differ in how they perform with adults in testing sessions, the length of testing will vary. Usually, testing will last 1.5 – 3 hours during each half-day visit. However, the examiner and team are sensitive to children’s needs, and breaks in testing are provided and planned according to parent’s desires.
You and your child have been invited to participate in a research study to understand the different types of autism based on physiology and behavior. By separating out different types of autism we hope to find the cause(s) and better treatments for each type. As part of the study, we ask that you help us get a detailed picture of your child's brain using Magnetic Resonance Imaging (MRI).
The MRI provides detailed pictures of the structure and connectivity of your child’s brain. MRI is very safe. It is a completely non-invasive procedure. This means that no needles are used and no chemicals or radiation (as is the case with X-rays) are used to create images. Instead it uses a powerful magnet and radio frequencies to create images of tissue in your body. Your child will be gently placed into a device known as an MRI scanner, which is a long tube surrounded by the magnet. The scanner sends and receives signals from the cells in your child's body. A computer interprets the signals into a set of images that you can see on a computer monitor and then stores the images in the computer for viewing or analysis. The most important factor in getting a good picture is for your child to remain still. Just like when a photograph is taken, any movement can cause the image to be blurry. One way to make sure that your child remains still is to get the image while your child is asleep. We will be working closely with you to make a plan that will work best for you and your child. One idea is to try to have your child fall asleep in the car on the way to the imaging center. If this does not work, we will have a bed set up in the scanner room so that you can go through a night time routine upon arrival until your child falls asleep.
This is not the kind of MRI scan that you would get for a medical reason, but a radiologist will routinely read these scans. Also, if you so indicate, a copy of the radiologist’s report may be sent to your child’s physician(s). In the rare case that there were unusual or puzzling results with your child's scan, the APP medical staff will contact you to discuss the findings and make recommendations for follow-up.
A pediatrician will collect a medical history about your family and conduct a short medical exam on your child. You child’s height, weight, and head circumference will be measured.
The blood draw allows researchers to study immune functions, genetics, and other possible biomarkers. A total of two to three tablespoons of blood will be collected from the participating child and their biological parents. The blood draw takes less than 30 minutes and is usually conducted at the MIND Institute. In some instances, another lab near the MIND Institute may be used.