Georgia SEED / Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) – Prospective Cohort Study

[CDC/National Center of Birth Defects and Developmental Disabilities]

Georgia SEED is a national study to identify risk factors for autism spectrum disorder (ASD) and other developmental disabilities (DD). The Georgia SEED team is one of six sites that form the CADDRE (Centers for Autism and Developmental Disabilities Research and Epidemiology) network, which are regional centers of excellence for ADD and DD across the United States. The primary goal of the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) is to estimate the prevalence of ASD and DD in the Atlanta area. The program serves as the model for the larger ADDM Network (Autism and Developmental Disability Monitoring) and is now one of eleven sites across the United States. TTi supports the Georgia SEED program to further identify risk factors and to understand potential exposures and associated outcomes for ASD/DD, through the implementation of a prospective cohort study. TTi was awarded the work in November 2017 and is still currently collaborating with experienced nurse researchers and with public health professionals with deep experience in the study and clinical treatment of developmental disabilities, public health surveillance, and implementing prospective observational studies. A hallmark of our team is a centralized day-to-day point of contact for staff to improve regular communication and management of the program and staff. Our experience proves that program staff retention and quality work depend heavily on a well-managed and communicative team. TTi also helps support the operations of the MADDSP program, including operational activities required to support an active surveillance system. These activities include data abstraction, assessment services, task coordination, and program support. Active surveillance is critical to estimating the prevalence of ASD and other characteristics among children. Maintenance of an ASD/DD surveillance system is a complex enterprise that requires careful planning and ongoing field testing of its components to ensure optimal functioning. Screening and abstraction requires dedicated staff trained in the methodology and mindful that (a) each individual only appears once in the database, (b) interpret and determine the clinical severity of the case, such as low IQ to estimate the ASD burden, and (c) provide the necessary information for education, research, and program planning. Additional part of our technical and project management work includes a systematized quality assurance methodology that will incorporate the standards established by the ADDM Network. We conduct quality assurance activities in the field (i.e., schools). Our team will negotiates and eases this process by furthering rapport and individual relationships between field staff and the abstractors and have managed the data abstraction and interpretation process.

Incumbent staff retention and new staff additions to bolster and support ongoing SEED and MADDSP efforts and minimize any potential disruption due to contract transition has been a critical success. Our team has provided the Birth Defects Center with rapid and successful staff transitioning during contract transitions, including several for CDC projects. Transitioning from the previous incumbent, TTi successfully brought on board 6 Autism Assessment specialists in under a month.

We thought conducting an additional prospective, longitudinal study was the only path forward. TTi solved our problem in a way that felt almost like magic to us, but the statistics were rigorous, have stood up to peer-review and have made a tremendous impact on adoption of our technology.

Frank Vicini, MD, CMO, IntraOp