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UC Davis MIND Institute

UC Davis MIND Institute

Frequently Asked Questions About the Autism Phenome Project

We are no longer recruiting new subjects at this time.

GENERAL

What is the APP?
What is a phenome?
How is this study differerent from other studies?
What are the eligibility requirements for a child to participate in the APP?
What are the benefits in participating in the APP?
What members of my family may participate in the APP study?
How do I enroll my child in the APP study and begin the process?
If my child is not eligible for the APP, are there other studies?
Who is paying for the APP research and study?
When will the results of the APP research be known and published?
What if I have questions, concerns, or issues during the study?


THE APP EXPERIENCE

How long will my child’s participation last?
What kind of time commitment is required for each appointment or each procedure?
Must my child complete all appointments within a certain time period?
May I schedule weekend or evening appointments?
Will I receive the results of each procedure and test session?
Will I receive compensation or reimbursement for expenses for my child’s participation?
May I withdraw from the study after enrolling?
What happens in years 1, 2, and 3 of the study?


MRI

What is an MRI?
Why are your doing an MRI?
Is an MRI safe and does it hurt?
My child is a light sleeper, what if he won’t sleep or wakes up during the MRI?
Are there any other options for my child in order to get him through an MRI?
If we decide on the sedation method, what are the risks for my child?
My child is very sensitive, how will you get him to put anything on his head?
What if the MRI isn’t normal?


MISCELLANEOUS

My child doesn’t like videos and you have a lot of video watching, can he/she still participate?
My child does not like blood draws. How will you help my child manage the experience?
What is the Environmental Exposure Questionnaire?

General

What is the APP?  
APP stands for the Autism Phenome Project.  We now believe that autism may not have one single biological cause, but rather several different biological causes.  We suspect that within autism there are subgroups with different biologics underlying their autism.  We believe that identifying these different subgroups will help us sort out the causations of autism and develop better interventions and treatments.

What is a phenome?
A phenome is a “type”.  When we study different autism phenomes we are studying different types of autism.

How is this study different from other studies?
A critical and unique feature of the APP is that all children will have a comprehensive evaluation ranging from genes to immune function to brain scans to behavior. We will then be able to assess and compare all of this information to develop meaningful subtypes.  We will be studying the course of these different kinds of autism over a period of five years, allowing us to learn the key characteristics of each type and how each develops over time.

What are the eligibility requirements for a child to participate in the APP?

  • Between ages of 2 to 4 when he/she begins the study.
  • Criteria includes 2 or more children with autism
  • Diagnosis of autism spectrum disorder
  • Live with at least one biological parent.
  • Must understand English.

What are the benefits in participating in the APP?
Each family must determine whether participation will benefit their child and/or family.  However, by participating, your family will be contributing to groundbreaking scientific research which may lead to a better understanding of the different types of autism, causes, and treatment; and you will receive feedback about your child’s development and progress.

What members of my family may participate in the APP study?
The eligible child will participate in all appointments as described in the APP experience. Parents will be involved in all aspects of the study including providing support to their children, observing all sessions, completing questionnaires, and contributing blood for immunology research.  Siblings are welcome to come to the MIND Institute while the subject participates in the study.  Child care is available with advance notice. 

How do I enroll my child in the APP study and begin the process?
If you haven’t been to the MIND Institute, but are interested in learning more about  APP or other studies, please contact Deani Li, APP Study Coordinator, at (916) 703-0448, ddli@ucdavis.edu. You may also enroll online using the following link https://mindweb.ucdmc.ucdavis.edu/studies/index.php?pid=detail&id=100038.

If my child is not eligible for the APP, are there other studies?
The MIND Institute has numerous ongoing research studies that are currently enrolling subjects.  Please check the other studies and their eligibility requirements.

Also, participation in APP doesn’t disqualify your child or children from participating in other MIND Institute studies.  Many families are enrolled in more than one study.

Who is paying for the APP research and study?
The Autism Phenome Project is funded through philanthropy and NIH grants.  We welcome private contributions to help fund the APP, expand the project nationally and carry it through to completion. To donate, please go to http://www.ucdmc.ucdavis.edu/giving/donations/online.html and designate “APP” in the “Special instructions for this gift”.  

When will the results of the APP research be known and published?
The APP is a long-term, comprehensive, and ambitious study that will eventually involve 1,800 children.  Data collection is an ongoing process and research often takes a long time.  However, as significant findings from the APP study become available, they will be noted in News, Presentations, Publications, and Events.

The APP Experience

What is an MRI?
MRI, or magnetic resonance imaging, uses a powerful magnet and radio frequencies to create images of tissue in your body. Your child will be gently put 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 get stored in the computer for viewing or analysis

Why are you doing an MRI?
We will be studying the structure of the brain using MRI.  We hope to learn more about differences in brain structure for children with autism.

Is an MRI safe and does it hurt?
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.   MRI’s don’t hurt but we do take additional measures to make things as comfortable as we can.  For example, we use both earplugs and headphones to decrease the noise level that the machine makes.  We also check to make sure there are no metal implants which could warm up during the process. 

My child is a light sleeper, what if he/she won’t sleep or wakes up during the MRI?
Sometimes, this does happen because different children will sleep differently.  Of course everyone is hoping that the children will sleep through the MRI, but if your child is unable to sleep, we will try a number of soothing techniques to help your child to relax or we will try again at a different time.  If your child wakes up,  we will work with you to help you to put your child back to sleep.  As each child participates we learn more about what works to help children to complete the MRI successfully.

Are there any other options for my child in order to get him through an MRI?
We recognize that children with autism often have sensory sensitivity and so we do offer a sedation option for children with autism who otherwise would be unable to participate.  A  special handout on sedation is available upon request.

If we decide on the sedation method, what are the risks for my child?
Specific information can be found in the sedation handout for families.

My child is very sensitive, how will you get him to put anything on his head?
We employ a number of strategies, depending on the child, and have been remarkably successful so far, even with children whose parents felt it would be impossible to have an EEG cap fitted or to have an MRI.  Our highly trained team members are experts in pediatric neuroimaging, neurophysiology, and autism. Distraction, desensitization, speed, competence and creativity help our team members do things that surprise even us sometimes.

What if the MRI isn’t normal?
This is not the kind of MRI scan that you would get for a medical reason,  but a radiologist will routinely read these scans. In the rare case that there were unusual or puzzling results with your child’s scan, you will be contacted by the APP medical staff to discuss the results.  The radiologist’s report may also be provided to your physician(s) if you desire.

MRI

What is an MRI?
MRI, or magnetic resonance imaging, uses a powerful magnet and radio frequencies to create images of tissue in your body. Your child will be gently put 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 get stored in the computer for viewing or analysis

Why are you doing an MRI?
We will be studying the structure of the brain using MRI.  We hope to learn more about differences in brain structure for children with autism.

Is an MRI safe and does it hurt?
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.   MRI’s don’t hurt but we do take additional measures to make things as comfortable as we can.  For example, we use both earplugs and headphones to decrease the noise level that the machine makes.  We also check to make sure there are no metal implants which could warm up during the process. 

My child is a light sleeper, what if he/she won’t sleep or wakes up during the MRI?
Sometimes, this does happen because different children will sleep differently.  Of course everyone is hoping that the children will sleep through the MRI, but if your child is unable to sleep, we will try a number of soothing techniques to help your child to relax or we will try again at a different time.  If your child wakes up,  we will work with you to help you to put your child back to sleep.  As each child participates we learn more about what works to help children to complete the MRI successfully.

Are there any other options for my child in order to get him through an MRI?
We recognize that children with autism often have sensory sensitivity and so we do offer a sedation option for children with autism who otherwise would be unable to participate.  A  special handout on sedation is available upon request.

If we decide on the sedation method, what are the risks for my child?
Specific information can be found in the sedation handout for families.

My child is very sensitive, how will you get him to put anything on his head?
We employ a number of strategies, depending on the child, and have been remarkably successful so far, even with children whose parents felt it would be impossible to have an EEG cap fitted or to have an MRI.  Our highly trained team members are experts in pediatric neuroimaging, neurophysiology, and autism. Distraction, desensitization, speed, competence and creativity help our team members do things that surprise even us sometimes.

What if the MRI isn’t normal?
This is not the kind of MRI scan that you would get for a medical reason,  but a radiologist will routinely read these scans. In the rare case that there were unusual or puzzling results with your child’s scan, you will be contacted by the APP medical staff to discuss the results.  The radiologist’s report may also be provided to your physician(s) if you desire.

ERP

What is an ERP?
ERP is the electrical response made by the brain when it processes information.  ERPs can be measured in a safe, completely non-invasive way using electroencephalography (EEG), a procedure that measures electrical activity of the brain through the skull and scalp.

Why are you doing an ERP?
This part of the Autism Phenome Project will look at how children’s brains will respond to sounds of varying loudness. Sometimes children who have been diagnosed with autism don’t seem to respond very much to sounds and at other times they may appear very sensitive to noise.  We are hoping to learn more about how the brains of children with autism take in and process sounds from their environment

Does an ERP hurt? 
There is no danger or pain at all involved with recording electrical activity from the brain in this way.  We will be measuring the very subtle electrical current coming from your child’s scalp, that is always present, but no electricity will be going to your child.

Miscellaneous

My child doesn’t like videos and you have a lot of video watching, can he/she still participate?
Yes.  Only parts of our study actually use videos as research tools.  We will do our best to strategize with you and see what we can do to make these parts as successful as the rest of the sessions.

My child does not like blood draws.  How will you help my child manage the experience?
The MIND Institute’s phlebotomy team wants to make the experience as manageable as possible for the child and family.  We have developed material to help the child and parents prepare for the experience and cope during the procedure.  Parents know their child’s needs the best, and will have an array of material from which to choose to help their child.

What is the Environmental Exposure Questionnaire?
The EEQ is an extensive phone interview with parents about the child's and family's environment. The interview, conducted in conjunction with the MIND Institute's CHARGE (Childhood Autism Risks from Genetics and the Environment) study, will help us learn more about environmental factors and their relationship to autism.