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Comparative Study of Haitian and Miami Cohorts of Haitian-American and Haitian Immigrant Children with Sickle Cell Disease (CSHSCD)

Award Number: R01HL149121
ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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Comparative Study of Haitian and Miami Cohorts of Haitian-American and Haitian Immigrant Children with Sickle Cell Disease (CSHSCD) - Project Summary/Abstract Sickle cell disease (SCD) is a chronic illness which affects mostly minorities in the United States. It is also a prevalent disease in the Caribbean. Children afflicted with SCD are prone to many complications, such as infections, pain and stroke. Newborn screening and comprehensive care with penicillin prophylaxis and immunizations, among other standard-of-care measures, provide the chance to improve quality of life and give the opportunity for survival. Haiti is one of the poorest countries in the Caribbean which does not count with resources at the present time to implement some of these measures. Haitians are a significant minority in South Florida, and are a third of the patients who attend the University of Miami Sickle Cell Clinic. This application presents the opportunity for collaborative research in database development and cohort surveillance studies for newborns and young children less than 6 years of age with SCD in the United States and Haiti. The research question is to what extent there are differences in incidence and health outcomes in the two geographic areas (Miami in Florida and in several Haiti sites). The proposal has 3 specific aims: 1. Determine the incidence of newborns of Haitian ethnicity with SCD in Miami Dade County using available databases from newborn screening. 2. Expand hospital-based newborn screening with point-of-care device and centralized laboratory screening capability in Haiti so that SCD incidence is confirmed, allowing for comparison with Aim 1. 3. Examine and compare barriers to care and health outcomes of the US-based Haitian ethnic cohort (with African-American sickle cell controls) and Haitian cohorts. We will build on previously obtained data that the incidence of SCD in Haiti among newborns is as high as 1 child out of 125 children born has SCD, and will expand the RED Cap database of children followed in Cap Haitien, Haiti. PhenX standardized measures will be used to expand the database for the Miami and Haitian sites. Demographics, changes in height and weight over time (growth), anemia severity, SCD-related complications including stroke risk according to transcranial Doppler ultrasound testing, treatment adherence, barriers to care via questionnaire assessment, acculturation in Haitian immigrants, and mortality will be collected. The implementation of transcranial Doppler ultrasound (TCD), which is a non- invasive method to screen for stroke risk, will be new in Haiti. We will accomplish this with staff training and tele- mentoring. Central reading will be done at the University of Miami. We expect to learn from and benefit a low resource setting in the Caribbean (Haiti), to impact Haitians living in the US, and promote strong international collaboration.


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: 2025 ( Subtotal = $0 )
2025	2023	UNIVERSITY OF MIAMI	1320 S DIXIE HWY STE 1200	CORAL GABLES	FL	33146	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	5	2/22/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2024 ( Subtotal = $0 )
2024	2023	UNIVERSITY OF MIAMI	1320 S DIXIE HWY STE 1200	CORAL GABLES	FL	33146	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	5	7/22/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2023 ( Subtotal = $398,668 )
2023	2023	UNIVERSITY OF MIAMI	1400 NW 10TH AVE	MIAMI	FL	33136	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	5	8/18/2023	NON-COMPETING CONTINUATION	$398,668
														Subtotal = $398,668

Issue Date FY: 2022 ( Subtotal = $549,085 )
2022	2022	UNIVERSITY OF MIAMI	1600 NW 10 AVE	MIAMI	FL	33136	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	4	6/23/2022	NON-COMPETING CONTINUATION	$549,085
														Subtotal = $549,085

Issue Date FY: 2021 ( Subtotal = $544,972 )
2021	2021	UNIVERSITY OF MIAMI	1600 NW 10 AVE	MIAMI	FL	33136	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	3	6/24/2021	NON-COMPETING CONTINUATION	$544,972
														Subtotal = $544,972

Issue Date FY: 2020 ( Subtotal = $551,945 )
2020	2020	UNIVERSITY OF MIAMI	1600 NW 10 AVE	MIAMI	FL	33136	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	001	2	7/30/2020	NON-COMPETING CONTINUATION	$551,945
2020	2019	UNIVERSITY OF MIAMI	1600 NW 10 AVE	MIAMI	FL	33136	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	1	2/4/2020	NEW	$0
														Subtotal = $551,945

Issue Date FY: 2019 ( Subtotal = $664,824 )
2019	2019	UNIVERSITY OF MIAMI	1600 NW 10 AVE	MIAMI	FL	33136	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	001	1	9/10/2019	NEW	$0
2019	2019	UNIVERSITY OF MIAMI	1600 NW 10 AVE	MIAMI	FL	33136	MIAMI-DADE	USA	Translation and Implementation Science Research for Heart, Lung, Blood Diseases, and Sleep Disorders	000	1	8/26/2019	NEW	$664,824
														Subtotal = $664,824

Grand Total All Awards = $2,709,494

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Comparative Study of Haitian and Miami Cohorts of Haitian-American and Haitian Immigrant Children with Sickle Cell Disease (CSHSCD)

Award Number: R01HL149121

ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

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

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