Development and Evaluation of an Information Management and Communication System for Population-wide Point-of-Care Infant Sickle Cell Disease Screening.

用于全人群护理点婴儿镰状细胞病筛查的信息管理和通信系统的开发和评估。

• 批准号: 10880478
• 负责人: Joseph Lubega
• 金额: $ 23.8万
• 依托单位: MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-16 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10880478
• 关键词: Adolescence; Adopted; Adoption; Adult; Affect; Africa; African; Algorithms; Android; Biological Assay; Caring; Cellular Phone; Cessation of life; Child; Childhood; Chronic; Cities; Clinical; Cluster randomized trial; Communication; Communities; Community Participation; Complex; Computer software; Continuity of Patient Care; Counseling; Country; Custom; Data; Demographic and Health Surveys; Development; Diagnosis; Disease; Early Diagnosis; Education; Erythrocytes; Evaluation; Event; Family; Feedback; Fostering; Goals; Health; Health Sciences; Health education; Health system; Hemolytic Anemia; Hospital Referrals; Income; Individual; Infant; Infant Care; Informatics; Information Management; Infrastructure; Inherited; Intervention; Level of Evidence; Logistics; Maintenance; Mission; Morbidity - disease rate; Operating System; Organ; Outcome; Outcomes Research; Pain; Patient Education; Patients; Pediatric Hematology; Phase; Policies; Population; Prevention; Process; Program Evaluation; Provider; Reproducibility; Research; Research Infrastructure; Resources; Rural; Rural Community; Sahara; Sampling; Sickle Cell; Sickle Cell Anemia; Site; Software Design; Specialist; Standardization; System; Test Result; Testing; Text Messaging; Time; Transportation; Uganda; United States National Institutes of Health; Universities; Vaccination; care coordination; clinical care; college; community based participatory research; community based research; cost; data centers; data exchange; data management; design; digital; disability; disorder control; evidence base; experience; feasibility testing; health care service; hydroxyurea; improved; improved outcome; innovation; low and middle-income countries; mHealth; mortality; multidisciplinary; novel; point of care; primary care provider; primary health center; programs; public health relevance; scale up; screening; screening program; screening services; smartphone application; transmission process

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.

项目总结