Studies to Advance Autism Research and Treatmen
Who Would Qualify?
Families with one or more children on the autism spectrum, including Autism, Asperger's or Pervasive Developmental Disorder (PDD)
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 and blood draws at your convenience. If your family is located outside of the vicinity of New York City, we will work with you over the phone and potentially locate other families in your area and travel to work with you.
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.
There is no fee for participation in our research and 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:
- 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 the genetics of autism, 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.
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 :
Connor M. Puleo
Research Coordinator
718-584-9000 x3628
connor.puleo@mssm.edu
Rachel Lally
Research Coordinator
718-584-9000x2713
rachel.lally@mssm.edu