Centers for Disease Control and Prevention (CDC) – Autism/DD Surveillance Grant

The Arizona Developmental Disabilities Surveillance Program (ADDSP) is designated by the Arizona Department of Health Services (ADHS) as the bona fide agent to continue surveillance of Autism Spectrum Disorders (ASD) and other developmental disabilities (DD) in Arizona. The ADHS is assigning the Director of the Arizona Birth Defects Monitoring Program to serve as the official liaison to the ADDSP. The program is an expansion of the Autism Spectrum Surveillance Program that is funded from September 2000 to May 2006 through a cooperative agreement with the CDC. It is a collaborative effort among the Section of Medical and Molecular Genetics and the Arizona University Center on Disabilities, University of Arizona Program Site; the Arizona Department of Education; the ADHS; and the Southwest Autism Research and Resource Center (SARRC) in Phoenix. The surveillance population under the new program will be eight-year old children with a parent residing in Maricopa County, Arizona, at any time during two study years, 2006 and another to be determined. The population of Maricopa County has risen steadily over the decade from 1994 to 2004. Over that period, annual births in the county have risen from 42,313 to 60,535. In the year 2000, births in the county numbered 54,470 and the census enumerated 47,458 eight year olds. The ADDSP will expand the surveillance to include four-year old children meeting the same residency requirement. The DD included in the surveillance are ASD (including autistic disorder, Asperger’s syndrome, and pervasive developmental disorder) and mental retardation (MR). The ADDSP will continue a multiple source surveillance methodology for these DD, including clinical data sources (Phoenix Children’s Hospital, St. Joseph’s Hospital Developmental Clinic, and St. Joseph’s Hospital Children’s Rehabilitative Services) and educational data sources (all special education records from public school districts in Maricopa County). The program will target additional sources for the four-year old population, including the SARRC. The methods are modeled after the Metropolitan Atlanta DD Surveillance Program (MADDSP) through collaboration with the multi-site Autism and DD Monitoring (ADDM) system that utilizes multiple sources for case finding, applies a uniform case definition for diagnostic confirmation of DD, and provides education and training for medical and non-medical personnel to enhance their capacity to diagnose and report DD. The major goals of the ADDSP are 1) to enhance and expand the current system to include both ASD and MR, 2) to collaborate with other surveillance sites in the implementation of multiple source surveillance for DD, and 3) to disseminate findings from the surveillance systems for ASD and MR. The program will expand its education and information dissemination capabilities through collaboration with the SARCC, which will assist in the dissemination of regular communications about the program and in the provision of education seminars for parents and professionals. It is anticipated that these data will bolster ongoing efforts to ensure that the resources for special education services and other services are made available to meet the needs of Arizona’s children with DD and their families.
This project will continue through July 1, 2008 and June 30, 2009 under the supervision of Dr. Sydney Pettygrove at the University of Arizona.