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Sickle Cell Data Collection Program

Award Number: NU58DD000036
ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)
OPDIV: CDC
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: HEALTH SERVICES
PERIOD OF PERFORMANCE START DATE: 09/30/2023
PERIOD OF PERFORMANCE END DATE: 09/29/2028

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Sickle Cell Data Collection Program - This component A proposal seeks to maintain and build on Georgia’s established sickle cell disease (SCD) stakeholder collaborative and population-based SCD surveillance system to provide 2 annual data reports and 1 multi-year data report to CDC, and to partner with CDC and other SCDC recipients on studies, dissemination, and responses to data requests that get actionable information to key audiences. It seeks to expand the SCDC infrastructure by forging new collaborations, both by incorporating new data sources into our current program, and by providing targeted technical assistance to a new SCDC state funded under component B. It further seeks to provide support to lead or contribute to annual peer-reviewed manuscripts with other SCDC recipients, to inform policies that will support the lives and well-being of the SCD community, and to inform and educate stakeholders about the epidemiology of SCD. We plan to achieve the short-term and intermediate outcomes below during the five-year period of performance. • Increased standardization and modernization of methods for SCD surveillance through peer mentoring of component B recipients and participation on both the SCDC Data Methods and Data Use work groups. • Increased number of public health workforce professionals who have an understanding of SCD surveillance through the number of students and early career professionals supported and engaged in SCDC activities and who are co-authors on SCDC publications. • Increased understanding of the incidence, prevalence, demographics, and healthcare utilization patterns of individuals with SCD through bi-annual updating of our surveillance dataset. • Increased ability to describe the geographic distribution, social determinants of health, and health disparities related to SCD through annually co-producing at least one new SCDC product and at least bi-annual data updates to web-based interactive maps/data visualizations. • Increased availability and accessibility of SCD surveillance data to support policies that improve the lives of people with SCD through providing aggregate data reports to CDC and leveraging all opportunities to educate legislators and policy makers with SCDC data. • Increased availability and accessibility of educational materials to facilitate shared decision making about SCD-related health care through dissemination of co-developed educational and toolkit products relating to SCD through the GA website & CDC electronic library. • Increased understanding of the epidemiology of SCD among individuals with SCD, family members and caregivers, health care providers, and policy makers through developing and implementing a consolidated SCDC communication & dissemination plan. • Increased utilization of SCD health outcomes, develop policy, allocate resources, and plan and implement services, especially those concerning health care, housing, transportation, education, and employment for people with SCD through data analysis, toolkit development, and peer-reviewed publications on topics such as reproductive health for individuals with SCD, SCD patients’ transition from pediatric to adult care, pediatric quality measures, and/or post-secondary educational accommodations for individuals with SCD.


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: 2026 ( Subtotal = $500,000 )
2026	2026	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$500,000
2026	2025	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$0
2026	2024	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$0
2026	2023	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$0
														Subtotal = $500,000

Issue Date FY: 2025 ( Subtotal = $476,611 )
2025	2025	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	9/11/2025	NON-COMPETING CONTINUATION	$476,611
2025	2024	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	9/11/2025	NON-COMPETING CONTINUATION	$0
2025	2023	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	9/11/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $476,611

Issue Date FY: 2024 ( Subtotal = $476,611 )
2024	2024	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	2	9/5/2024	NON-COMPETING CONTINUATION	$476,611
2024	2023	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	2	9/5/2024	NON-COMPETING CONTINUATION	$0
2024	2023	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	01	1	11/27/2023	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $476,611

Issue Date FY: 2023 ( Subtotal = $476,611 )
2023	2023	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	1	9/14/2023	NEW	$476,611
														Subtotal = $476,611

Grand Total All Awards = $1,929,833

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Sickle Cell Data Collection Program

Award Number: NU58DD000036

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

OPDIV: CDC

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: HEALTH SERVICES

PERIOD OF PERFORMANCE START DATE: 09/30/2023

PERIOD OF PERFORMANCE END DATE: 09/29/2028

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