ACE Network: A Comprehensive Approach to the Identification of Autism Susceptibility Genes
Reference Number: 201105377
WHAT IS THE PURPOSE OF THE STUDY?
This study is being done to identify genetic factors leading to autism, while at the same time increasing representation of African-Americans in the Autism Genetic Resource Exchange (AGRE), a national data repository for autism.
WHO IS NEEDED?
We are looking for African American families and bi-racial African-American families with at least one child diagnosed with or suspected of having an Autism Spectrum Disorder and one biological parent willing to participate.
WHAT IS INVOLVED IF I PARTICIPATE?
Duration: Your study involvement is expected to last between 12-16 hours.
Tests/Procedures: The study will be structured into one to three laboratory visits which will include: collection of biomaterials (blood) for inclusion into AGRE from at least one biological parent, your child(ren) who is diagnosed with an ASD, and participating siblings; social responsiveness questionnaires completed on participating family members; an autism diagnostic assessment (ADOS); a cognitive testing measure completed with your child(ren); a developmental history interview (ADIR) completed by parent-report; an interview of your child's current level of function (Vineland) and an interview about the process of receiving an ASD diagnosis and access to services (parent interview).
Risks: One potential risk of participating in this study is that confidential information about you may be accidentally disclosed. We will use our best efforts to keep the information about you secure, and we think the risk of accidental disclosure is very small. You may be uncomfortable answering a question during the interview. You have the right to refuse to answer any question for any reason.
Benefits: The study is entirely designed to someday benefit all individuals and families affected by autism. In addition, your family's contribution to this project will result in a lasting resource for scientific efforts that may extend for decades. For the immediate future, your family may request results from the assessments that we complete as part of the study, which you may find useful for confirming an existing diagnosis, support for new and appropriate treatment, and/or guidance for continuing interventions.
Compensation: Families will receive $200 upon completion of the study. Families with more than one child diagnosed with an ASD will receive $125 for each additional participating affected child.
WHO IS THE PRINCIPAL INVESTIGATOR (DOCTOR)?
John N. Constantino, M.D.
WHERE WILL THE STUDY TAKE PLACE?
Washington University School of Medicine
St. Louis, MO
Anna Abbacchi (314-286-0552)