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: 10473745
• 负责人: Joseph Lubega
• 金额: $ 15.29万
• 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 2023-08-10
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10473745
• 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; 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 Status; Health education; Health system; Hemolytic Anemia; Hospital Referrals; Income; Individual; Infant; Infant Care; Informatics; Information Management; Infrastructure; Inherited; Intervention; Level of Evidence; Life; Logistics; Maintenance; Mission; Morbidity - disease rate; Operating System; Organ; Outcome; Outcomes Research; Pain; Patient Education; Patients; Pediatric Hematology; Phase; Policies; Population; Pre-Post Tests; 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; base; care coordination; care outcomes; care providers; clinical care; college; community based participatory research; community based research; cost; data centers; data management; design; digital; digital health; 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; 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.

项目摘要 尽管超过75％的镰状细胞病（SCD）的儿童出生在萨哈拉以下疾病，该疾病高度贡献 5岁以下的死亡率并导致终身衰弱，控制SCD的循证策略并不广泛 在该地区实施。通用婴儿筛查对SCD的早期检测是SCD控制的支柱。尽管有 负担能力并采取了在撒哈拉以南非洲采用核对点（POC）SCD筛选测定的行动，缺乏筛查 信息管理和通信系统（SIMC）阻碍了标准化，系统，协调的， 全国SCD筛选计划。拟议研究的长期目标是开发SCD SIMC，将 在撒哈拉以南非洲环境中启用普遍的SCD筛查。目的是测试和优化自定义SCD SIMCS应用程序和数字网络促进SCD筛选，然后评估其对SCD筛查的影响和 在乌干达的SCD儿童的护理和临床结果。中心假设是SCD SIMC将 促进在城市和乌干达的卫生中心可以访问的准确和协调的POC SCD筛查。这 理由是为乌干达现有的全国数字和健康基础设施建立自定义的SCD SIMC 标准化全国卫生中心的负担得起的造血CCTM POC分析。中心假设将 通过追求两个具体目标来测试：1）开发和评估一个四模块≥3G手机应用程序的新型SCD SIMC（R21阶段）; 2）评估SCD SIMC对获得儿童筛查和护理和结果的影响 与SCD（R33相）。我们将使用软件设计和重组的创新组合来追求这些目标 SCD筛选工作流程。其中包括与iOS和Android兼容的现成软件的组装 操作系统可靠，准确，可轻松捕获，解释，传输和检索/检索/播放信息 患者的ID，测试结果，明显的临床事件和教育。新颖的筛选工作流程有望 动态降低成本并增加获得SCD筛查和护理的机会。拟议的研究很重要，因为 它将决定如何在全国范围内使用POC SCD筛选测定法。它也将实现 基于循证的护理和小学和专业提供者之间的护理以及对患者的纵向 终生 - 控制这种终身疾病的关键方面。 SCD SIMC还将促进实时数据 SCD控制的研究和政策管理。这项研究的预期直接结果是SCD SIMCS 该最佳功能在乌干达的数字和健康基础设施上发挥作用，并展示其对进入的影响 SCD筛查和护理以及SCD儿童的临床结果。预期的长期结果是SCD SIMC将在乌干达和其他撒哈拉以南非洲国家的卫生系统中采用，整合和扩展， 尤其是那些已经采用了SCD筛查的国家标准的疾病型CTCTM。如果 有效，SCD SIMC将产生重要的积极影响，因为它将降低SCD筛查的成本，接受 筛查服务和基于证据的护理，更靠近萨哈拉以南儿童的农村社区附近 非洲生存，最终使数百万儿童免于可预防和残疾死亡。