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Enhancing Public Health Surveillance of Autism Spectrum Disorder through the Maryland Autism and Developmental Disabilities Monitoring (MD-ADDM) Network

Award Number: NU53DD000004
ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)
OPDIV: CDC
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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The Centers for Disease Control and Prevention (CDC) initiated a public health surveillance network for Autism Spectrum Disorder (ASD) in order to provide an ongoing source of high-quality data on the extent and distribution of ASD in the population. The approach used by this network, the Autism and Developmental Disabilities Monitoring (ADDM) Network, implements a case-finding algorithm for ASD based entirely on retrospective record review, emphasizing reports of evaluations found in both clinical and special education records. Specifically, this approach takes particular behaviors mentioned in educational and medical records and codes them into American Psychiatric Association’s Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) criteria accordingly. DSM-5 criteria started being implemented from surveillance year (SY) 2014, and will be used to code case status for SYs 2018 and 2020. Because this public health surveillance ascertains cases using a common methodology across multiple U.S. communities, it provides valid and reliable means for tracking U.S. ASD prevalence trends over time and for describing and comparing characteristics of ASD cases. The most recent overall ASD prevalence estimate from the ADDM Network is 16.8 per 1,000 children aged 8 years in 2014 - an increase of 150% since 2000; while the overall estimate from the Maryland site is 20.0 per 1,000. These prevalence rates were estimated based on data collected on 8-year-olds living in defined regions of ADDM sites, of which Maryland-ADDM has been one of the few that has participated since the ADDM Network’s inception. Considerable debate continues among researchers and clinicians as to how much of the increase in ASD prevalence is due to changes in risk vs. changes in detection. The value of ongoing ASD surveillance is thus enormous and would provide the ASD community with information that would benefit researchers, clinicians, and policymakers alike. Because ASD does not have an identifiable lesion nor a reliable biomarker, case identification and confirmation present considerable challenges. Reliance on administrative data alone would likely introduce bias, while any approach involving direct parent surveying or assessment of children quickly becomes prohibitively resource-intensive for a large population. For that reason, a records-based approach that goes beyond relying exclusively on a final diagnosis/classification, like that described in this proposal, appears the logical starting point. The purpose of the proposed project is to conduct and enhance a population-based ASD surveillance approach in Maryland for SY2018 and SY2020 using methodology that is comparable with the current ADDM Network model. Specifically, we will continue to be compatible with the ADDM Network model for 8-year-old ASD surveillance, and will newly implement the 4-year-old ASD surveillance approach using ADDM methodology. In addition, we will conduct a follow-up for ASD surveillance and transition planning among 16-year-old children whose records were abstracted for ASD at age 8 years in surveillance years 2010 and 2012 (Component B). The expected outcomes of the proposed project are to 1) obtain high-quality data for robust ASD prevalence estimates for SY2018 and SY2020, 2) improve understanding of trends and disparities over time in ASD, 3) improve understanding of differences in ASD characteristics among children aged 4 years, 8 years, and 16 years, 4) increase dissemination of ADDM data, and 5) improve efficiency of the ADDM surveillance approach.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2023 ( Subtotal = $0 )
2023	2022	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	02	4	12/20/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2022	JOHNS HOPKINS UNIVERSITY, THE	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	03	4	6/16/2023	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2021	JOHNS HOPKINS UNIVERSITY, THE	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	03	4	6/16/2023	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2021	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	02	4	12/20/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $556,538 )
2022	2022	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	01	4	6/23/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2022	JOHNS HOPKINS UNIVERSITY, THE	3400 N CHARLES ST	BALTIMORE	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	00	4	11/19/2021	NON-COMPETING CONTINUATION	$556,538
2022	2021	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	01	4	6/23/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2021	JOHNS HOPKINS UNIVERSITY, THE	3400 N CHARLES ST	BALTIMORE	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	00	4	11/19/2021	NON-COMPETING CONTINUATION	$0
														Subtotal = $556,538

Issue Date FY: 2021 ( Subtotal = $556,538 )
2021	2021	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	01	3	6/29/2021	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2021	2021	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	00	3	12/5/2020	NON-COMPETING CONTINUATION	$556,538
														Subtotal = $556,538

Issue Date FY: 2020 ( Subtotal = $556,538 )
2020	2020	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	01	2	2/25/2020	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2020	2020	Johns Hopkins University, The	3400 N Charles St	BALTIMORE	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	00	2	11/27/2019	NON-COMPETING CONTINUATION	$556,538
														Subtotal = $556,538

Issue Date FY: 2019 ( Subtotal = $556,538 )
2019	2019	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	02	1	3/4/2019	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2019	2019	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	01	1	12/21/2018	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$150,000
2019	2019	Johns Hopkins University, The	3400 N Charles St	Baltimore	MD	21218	BALTIMORE CITY	USA	Autism and Other Developmental Disabilities, Surveillance, Research, and Prevention	00	1	12/7/2018	NEW	$406,538
														Subtotal = $556,538

Grand Total All Awards = $2,226,152

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Enhancing Public Health Surveillance of Autism Spectrum Disorder through the Maryland Autism and Developmental Disabilities Monitoring (MD-ADDM) Network

Award Number: NU53DD000004

ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)

OPDIV: CDC

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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