R33TW011898
Project Grant
Overview
Grant Description
Development and evaluation of an information management and communication system for population-wide point-of-care infant sickle cell disease screening - project summary.
Although over 75% of children with sickle cell disease (SCD) are born in sub-Saharan Africa, where the disease highly contributes to under-5 mortality and causes life-long debilitation, evidence-based strategies to control SCD are not widely implemented in this region. Early detection of SCD by universal infant screening is a pillar of SCD control.
Despite the affordability and move to adopt point-of-care (POC) SCD screening assays in sub-Saharan Africa, the absence of screening information management and communication systems (SIMCS) impedes standardized, systematic, coordinated, nationwide SCD screening programs.
The long-term goal of the proposed research is to develop a SCD SIMCS that will enable universal SCD screening in the sub-Saharan African setting. The objective is to test and optimize a custom SCD SIMCS app and digital network to facilitate SCD screening and then evaluate its impact on access to SCD screening and care and on clinical outcomes of children with SCD in Uganda.
The central hypothesis is that the SCD SIMCS will facilitate accurate and coordinated POC SCD screening that is accessible at health centers in urban and rural Uganda. The rationale is to build a custom SCD SIMCS on existing nationwide digital and health infrastructure in Uganda to standardize use of the affordable HemoTypeSC™ POC assay at health centers nationwide.
The central hypothesis will be tested by pursuing two specific aims: 1) develop and evaluate a four-module =3G cell phone app for a novel SCD SIMCS (R21 phase); 2) evaluate the impact of the SCD SIMCS on access to screening and care and outcomes of children with SCD (R33 phase).
We will pursue these aims using an innovative combination of software design and re-organization of SCD screening workflows. These include assembly of off-the-shelf software that is compatible with iOS and Android operating systems to reliably, accurately, and handily capture, interpret, transmit, and retrieve/playback information for patient's IDs, test results, salient clinical events, and education.
The novel screening workflows are expected to dramatically reduce the cost and increase access to SCD screening and care. The proposed research is significant because it will determine how to use POC SCD screening assays on a large nationwide scale. It will also enable coordination of evidence-based care and continuity of care between primary and specialist providers and longitudinally over the patient's lifetime - a critical aspect in controlling this life-long disease.
The SCD SIMCS will also facilitate real-time data management for research and policy for SCD control. The expected immediate outcome of this research is a SCD SIMCS that optimally functions on the digital and health infrastructure in Uganda and demonstration of its impact on access to SCD screening and care and on clinical outcomes of children with SCD.
The expected long-term outcome is that the SCD SIMCS will be adopted, integrated, and scaled-up in the health systems of Uganda and other sub-Saharan Africa countries, particularly those where the HemoTypeSC™ has already been adopted as the national standard of SCD screening.
If effective, the SCD SIMCS will have an important positive impact because it will reduce the cost of SCD screening, take screening services and evidence-based care closer to rural communities where the majority of children in sub-Saharan Africa live, and, ultimately, save millions of children from preventable and disability death.
Although over 75% of children with sickle cell disease (SCD) are born in sub-Saharan Africa, where the disease highly contributes to under-5 mortality and causes life-long debilitation, evidence-based strategies to control SCD are not widely implemented in this region. Early detection of SCD by universal infant screening is a pillar of SCD control.
Despite the affordability and move to adopt point-of-care (POC) SCD screening assays in sub-Saharan Africa, the absence of screening information management and communication systems (SIMCS) impedes standardized, systematic, coordinated, nationwide SCD screening programs.
The long-term goal of the proposed research is to develop a SCD SIMCS that will enable universal SCD screening in the sub-Saharan African setting. The objective is to test and optimize a custom SCD SIMCS app and digital network to facilitate SCD screening and then evaluate its impact on access to SCD screening and care and on clinical outcomes of children with SCD in Uganda.
The central hypothesis is that the SCD SIMCS will facilitate accurate and coordinated POC SCD screening that is accessible at health centers in urban and rural Uganda. The rationale is to build a custom SCD SIMCS on existing nationwide digital and health infrastructure in Uganda to standardize use of the affordable HemoTypeSC™ POC assay at health centers nationwide.
The central hypothesis will be tested by pursuing two specific aims: 1) develop and evaluate a four-module =3G cell phone app for a novel SCD SIMCS (R21 phase); 2) evaluate the impact of the SCD SIMCS on access to screening and care and outcomes of children with SCD (R33 phase).
We will pursue these aims using an innovative combination of software design and re-organization of SCD screening workflows. These include assembly of off-the-shelf software that is compatible with iOS and Android operating systems to reliably, accurately, and handily capture, interpret, transmit, and retrieve/playback information for patient's IDs, test results, salient clinical events, and education.
The novel screening workflows are expected to dramatically reduce the cost and increase access to SCD screening and care. The proposed research is significant because it will determine how to use POC SCD screening assays on a large nationwide scale. It will also enable coordination of evidence-based care and continuity of care between primary and specialist providers and longitudinally over the patient's lifetime - a critical aspect in controlling this life-long disease.
The SCD SIMCS will also facilitate real-time data management for research and policy for SCD control. The expected immediate outcome of this research is a SCD SIMCS that optimally functions on the digital and health infrastructure in Uganda and demonstration of its impact on access to SCD screening and care and on clinical outcomes of children with SCD.
The expected long-term outcome is that the SCD SIMCS will be adopted, integrated, and scaled-up in the health systems of Uganda and other sub-Saharan Africa countries, particularly those where the HemoTypeSC™ has already been adopted as the national standard of SCD screening.
If effective, the SCD SIMCS will have an important positive impact because it will reduce the cost of SCD screening, take screening services and evidence-based care closer to rural communities where the majority of children in sub-Saharan Africa live, and, ultimately, save millions of children from preventable and disability death.
Funding Goals
THE JOHN E. FOGARTY INTERNATIONAL CENTER (FIC) SUPPORTS RESEARCH AND RESEARCH TRAINING TO REDUCE DISPARITIES IN GLOBAL HEALTH AND TO FOSTER PARTNERSHIPS BETWEEN U.S. SCIENTISTS AND THEIR COUNTERPARTS ABROAD. FIC SUPPORTS BASIC BIOLOGICAL, BEHAVIORAL, AND SOCIAL SCIENCE RESEARCH, AS WELL AS RELATED RESEARCH TRAINING AND CAREER DEVELOPMENT. THE RESEARCH PORTFOLIO IS DIVIDED INTO SEVERAL PROGRAMS THAT SUPPORT A WIDE VARIETY OF FUNDING MECHANISMS TO MEET PROGRAMMATIC OBJECTIVES.
Grant Program (CFDA)
Awarding / Funding Agency
Place of Performance
Uganda
Geographic Scope
Foreign
Related Opportunity
Analysis Notes
Amendment Since initial award the total obligations have increased 200% from $238,039 to $713,752.
Makerere University College Of Health Sciences was awarded
Development of SCD SIMCS for Population-Wide POC Screening
Project Grant R33TW011898
worth $713,752
from Fogarty International Center in August 2021 with work to be completed primarily in Uganda.
The grant
has a duration of 4 years 8 months and
was awarded through assistance program 93.989 International Research and Research Training.
The Project Grant was awarded through grant opportunity Mobile Health: Technology and Outcomes in Low and Middle Income Countries (R21/R33 - Clinical Trial Optional).
Status
(Ongoing)
Last Modified 6/5/25
Period of Performance
8/16/21
Start Date
4/30/26
End Date
Funding Split
$713.8K
Federal Obligation
$0.0
Non-Federal Obligation
$713.8K
Total Obligated
Activity Timeline
Transaction History
Modifications to R33TW011898
Additional Detail
Award ID FAIN
R33TW011898
SAI Number
R33TW011898-784259479
Award ID URI
SAI UNAVAILABLE
Awardee Classifications
Public/State Controlled Institution Of Higher Education
Awarding Office
75NF00 NIH Fogarty International Center
Funding Office
75NF00 NIH Fogarty International Center
Awardee UEI
QSXBGHKN8KV6
Awardee CAGE
STR11
Performance District
Not Applicable
Budget Funding
| Federal Account | Budget Subfunction | Object Class | Total | Percentage |
|---|---|---|---|---|
| John E. Fogarty International Center, National Institutes of Health, Health and Human Services (075-0819) | Health research and training | Grants, subsidies, and contributions (41.0) | $238,039 | 100% |
Modified: 6/5/25