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.

项目概要 尽管超过 75% 的镰状细胞病 (SCD) 儿童出生在撒哈拉以南地区，该地区的疾病发病率很高 导致 5 岁以下儿童死亡率并导致终生虚弱，控制 SCD 的循证策略并未得到广泛应用 尽管存在这种情况，但通过普遍婴儿筛查来早期发现 SCD 仍然是 SCD 控制的一个支柱。 撒哈拉以南非洲地区缺乏筛查，因此开始采用即时护理 (POC) SCD 筛查方法 信息管理和通信系统（SIMCS）阻碍了标准化、系统化、协调性、 拟议研究的长期目标是开发一个 SCD SIMCS，它将 在撒哈拉以南非洲地区实现普遍的 SCD 筛查 目标是测试和优化定制的 SCD。 SIMCS 应用程序和数字网络，以促进 SCD 筛查，然后评估其对获得 SCD 筛查的影响 乌干达 SCD 儿童的护理和临床结果的中心假设是 SCD SIMCS 将。 促进准确和协调的 POC SCD 筛查，该筛查可在乌干达城市和农村的卫生中心进行。 其基本原理是在乌干达现有的全国数字和卫生基础设施上构建定制的 SCD SIMCS， 中心假设将在全国卫生中心标准化使用经济实惠的 HemoTypeSCTM POC 检测。 通过追求两个具体目标进行测试：1) 为新型 SCD 开发和评估四模块 ≥3G 手机应用程序 SIMCS（R21 阶段）；2) 评估 SCD SIMCS 对儿童获得筛查和护理以及结果的影响 我们将通过软件设计和重组的创新组合来实现这些目标。 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。 操作系统能够可靠、准确、方便地捕获、解释、传输和检索/回放信息 患者的 ID、测试结果、显着临床事件和教育预计将得到改善。 显着降低成本并增加 SCD 筛查和护理的机会 这项研究意义重大，因为。 它将决定如何在全国范围内使用 POC SCD 筛查测定，还将促进协调。 初级和专科医疗服务提供者之间以及患者纵向护理的循证护理和连续性 生命周期——控制这种终生疾病的一个关键方面 SCD SIMCS 还将促进实时数据。 SCD 控制的研究和政策管理 本研究的预期直接成果是 SCD SIMCS。 在乌干达的数字和卫生基础设施上发挥最佳作用，并展示其对获得服务的影响 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。 SIMCS 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、整合和扩大， 特别是那些 HemoTypeSCTM 已被采纳为 SCD 筛查国家标准的国家。 如果 SCD SIMCS 有效，将会产生重要的积极影响，因为它将降低 SCD 筛查的成本，采取 为撒哈拉以南地区大多数儿童居住的农村社区提供筛查服务和基于证据的更密切护理 非洲生存并最终使数百万儿童免遭可预防的残疾死亡。