A Family/Genetic Study of Autism:
Who Would Qualify?
Families with one or more children with an autism spectrum disorder (including Autism, Asperger's or Pervasive Developmental Disorder) with one of the affected children age eight or older. In addition, the child with the disorder must be able to follow directions and sit for a short period of time in front of a laptop computer.
OR
Families without autistic or developmentally delayed immediate family members willing to act as "control" subjects. Control families must also have children over the age of ten who are able to follow directions and sit for a short period of time in front of a laptop computer.What Will I do in this Study?
The study involves a complete evaluation of the affected children, unaffected children and adult family members. At your convenience, a trained member of our research team will first speak with you over the phone to explain our research and answer any questions you may have. If your family is located in the vicinity of New York City, we will then travel to your home, conducting all interviews, observations, implicit learning testing and blood draws at your convenience.
On average, our team will speak with you over the phone and then visit your home three times. A trained phlebotomist will visit one additional time. After an informal consent procedure, where we will explain our research in detail, you will be asked to sign consent documents which have been reviewed by out Institutional Review Board. We are able to release copies of the results of our assessments and lead testing if you would like.
We will be using some or all of the following assessments to gather phenotypical information about the members of your family:
Assessments with or about individuals with Autism:
- Implicit Learning Task using a Laptop Computer and Images.
- The Autism Diagnostic Interview Revised (ADI-R)
- The Autism Diagnostic Observational Schedule (ADOS)
- The Vineland Adaptive Behavior Scale
- The Yale-Brown Obsessive Compulsive Scale
- The Gilliam Asperger's Disorder Scale (GADS)
- The Leiter International Performance Scale
- The Mullen Scales of Early Learning
- The Peabody Picture Vocabulary Test
- The Wechsler Abbreviated Scale of Intelligence
- The Comprehensive Test of Phonological Processing (CTOPP
Assessments with or about individuals not diagnosed with Autism:
• Broader Phenotype Assessment (BPA)
• Family History Interviews
• The Vineland Adaptive Behavior Scale
• The Yale-Brown Obsessive Compulsive Scale
In addition, all members of the family over the age of two years will be asked to donate a small sample of their blood (30cc). These samples will be used for cell line immortalizations and DNA extraction for identification of genetic polymorphisms that might be linked with the disorder or a related phenotype.
Our study focuses on both the genetics of autism as well as how your child processes information, but unfortunately we are not able to give you specific details about your family's genetic makeup. We are currently comparing all of the families in our database to one another and your family's blood samples will be used to find genetic similarities, duplications, deletions or other markers that may help us to better understand the underlying causes of the disorder. We are also using the results of the implicit learning tasks to compare individuals with an autism spectrum disorder to one another as well as to control subjects to better understand how children with autism learn.If you are interested in participating with us or would simply like more information about our research, please contact one of our research coordinators below :
Colleen Lang
Research Coordinator
212-659-8841
Colleen.lang@mssm.edu