We invite you to be in a research study called the Central Ohio Registry for Autism (CORA) because your child or another member of your family has been diagnosed with autism, Asperger syndrome, or pervasive developmental disorder not otherwise specified (PDD-NOS). These conditions are often grouped together and are called autism spectrum disorders (ASDs).
What is the purpose of CORA?
We started CORA in 2006 to provide opportunities for families in central Ohio to participate in local and national research studies examining the causes, diagnosis, and treatment of autism spectrum disorders (ASDs). As part of this study, we will collect and store medical information and blood samples on individuals with ASDs and their family members. Once enrolled, blood samples and medical information will be used in our current and future research projects.
How can my family participate?
To participate, your child must have a formal diagnosis of an ASD and had basic genetic testing (including microarray analysis and fragile X testing at a minimum; a full genetics consultation is preferred). You must be willing to give consent (for you and/or your child), provide information about your medical and family history and/or give us permission to obtain medical records. Your child and both biological parents (if available) must also agree to donate a small amount of blood. When available, we also like to enroll unaffected siblings. You may be asked to complete 1 or more psychological tests.
Who will be in this study?
Most families will come from Nationwide Children’s Hospital (Columbus) and Wright Patterson Air Force Base (Dayton). We hope to have about 350 families, for a total of about 1,250 participants.
What types of research projects are being done?
Some of the current research projects include identification of autism susceptibility genes and investigations of genes that may help predict behavioral treatment outcomes and response to medications. Once enrolled, CORA families will be considered for all appropriate research projects. Research results are generally not released to families.
Who is doing this research?
This research study is being led by Dr. Gail E. Herman at The Research Institute at Nationwide Children’s Hospital located in Columbus, Ohio. Other doctors, clinicians and scientists involved in the study from Nationwide Children’s and Wright Patterson Medical Center include Drs. Butter and Schulteis. The study coordinator is Emily Hansen.
Are there any costs associated with participating?
It will not cost you anything to be in this study. You will not be paid to be in this study.