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NCS Formative Research Project #8 – Development and Validation of Autism Case Confirmation Approaches for Use in the National Children’s Study

Principal Investigator:

The overarching goal of this proposed project is to assess the criterion validity of three new autism spectrum disorder (ASD) case confirmation instruments against gold standard classification based on the current accepted gold-standard tools - the Autism Diagnosis Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). These three instruments (parent self-report, parent interview, and direct observation) could potentially be incorporated into the final National Children’s Study (NCS) protocol.

The three instruments being considered are designed to be administered by staff without special training and experience related to neurodevelopmental disabilities, and to be less time-consuming to administer than current gold-standard tools. The administration of the gold standards for ASD confirmation, ADOS and ADI-R, can exceed four hours and usually involves the need for extensive instrument-specific training and reliability establishment. The goal of the current study is to determine if alternate case confirmation approaches that would not be overly burdensome to NCS in terms of participant time or study resources, can confirm ASD cases with satisfactory validity when administered by NCS field staff with no previous ASD expertise.

Children (aged 30 months to 39 months) and their parents who have concerns of ASD or a development delay without concerns of ASD will be asked to join the study. They will make a three hour visit to the Kennedy Krieger Institute Center for Autism and Related Disorders at least a week before their scheduled diagnostic assessment visit. During the visit, children and their parents will complete the three new ASD case confirmation instruments. After their diagnostic assessment visit, a research team member will follow up with the clinician regarding the diagnosis given. Outcome will be assessed by comparing scores on each of the three brief case-confirmation instruments against the diagnostic assessment visit. If one or more of these case-confirmation instruments prove to be valid, it will help NCS identify children with ASD in a more time and cost effective manner.

Bradley L. Schlaggar, M.D., Ph.D., Named President and CEO of Kennedy Krieger Institute

We’re thrilled to welcome Bradley L. Schlaggar, M.D., Ph.D., to the Kennedy Krieger family as our next President and CEO.

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