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-Sahara 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-Sahara 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-Sahara 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 HemoTypeSCTM 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-Sahara Africa countries,
particularly those where the HemoTypeSCTM 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-Sahara
Africa live, and, ultimately, save millions of children from preventable and disability death.
