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Dear Friends:

Welcome to the Autism Phenome Project!

The scientists and clinicians at the M.I.N.D. Institute are dedicated to understanding disorders such as autism, to prevent them from occurring when possible, and to more effectively treat children already affected by them. The founding families of the M.I.N.D. Institute challenged us to carefully think about the major roadblocks to progress and then focus our efforts on clearing them away.

A major roadblock for autism research has been the large number and unexplained variety of symptoms and other conditions we see in our patients. Some children with autism have epileptic seizures but many do not. Some children with autism have terrible gastrointestinal disorders but others do not. Even though all children with autism share some common features, such as problems with social interaction, there are so many different types and combinations of symptoms; it has been very difficult to study.

We have come to believe that autism is not a single disorder but rather a group of disorders – AutismS versus Autism. Each one of these autisms may have a different cause. We also think that each type of autism will most benefit from different types of treatment. The Autism Phenome Project (phenome just means type) is designed to gather enough biomedical and behavioral information to more clearly define the different types of autism. At the same time, we will be gathering important information on children with developmental delays that will help us to understand this complex group of disorders.

Why is the Autism Phenome Project different from previous research on autism? Previous research on autism has been limited in scope. The behavior of some children has been studied, but their brains were not. Other children participated in brain studies but did not have their immune systems evaluated. A critical and unique feature of the Autism Phenome Project 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. For example, perhaps children with stomach and digestion problems also have immune system problems. And, maybe children with seizures also have specific brain differences. These kinds of comparisons just cannot be done unless we are able to collect information in all of these different areas for each child.

What are our goals? By defining distinct types of autism, it will be faster and easier for scientists to study the causes of each type. In some cases, this may end up leading to preventions. We also believe that defining types of autism will lead to better treatment. Instead of receiving a diagnosis of autism, this study may allow clinicians to be able to diagnose autism type A versus autism type B. And, with this added knowledge, the best possible treatment for that child can be selected.

The Autism Phenome Project would not be possible without your participation. We know that we are asking a great deal from you and your children. For your participation, even in the face of these demands, we are eternally grateful. Whether you have a child with autism, developmental delays or a typically developing child, please know this: you are participating in ground breaking scientific research that will make the world a better place for children in the future. Know that we have carefully considered every test and procedure that we are asking you and your child to participate in. Care and concern about your well being and safety is always foremost in everything we plan. This means that if you ever have concerns or questions, please feel free to contact me or any other member of the Autism Phenome Project team. We want you and your child’s experiences to be as positive and rewarding as we can make them.

We thank you for your participation and for helping us all to solve the difficult problem of autism.

With warmest regards,

David G. Amaral, Ph.D
Research Director, M.I.N.D. Institute
Principal Investigator, APP



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