A Novel Mobile Application for Childhood Nephrotic Syndrome Management

项目总结/摘要 该提案是一项多学科研究和培训计划，旨在严格评估和完善以用户为中心的 儿童肾病综合征管理的移动的应用程序（app），并使申请人， 为了获得在肾脏疾病干预方面独立研究所需的技能， 制定和执行。该研究计划的主要目标是提高自我- 儿童肾病综合征是最常见的慢性肾脏疾病之一， 儿童疾病。这种疾病的特点是在大多数患者中呈复发-缓解模式 并且具有高的并发症发生率和治疗副作用。警惕的家庭护理是疾病的核心 管理，但许多家庭发现很难坚持的要求。我们的跨学科团队建立了 一个新颖的移动的应用程序（UrApp），帮助家庭进行自我管理。UrApp具有出色的技术有效性， 在初步可用性测试中得到用户的好评。在本提案中，我们将进行一项随机试点， 在三个儿科中心对新诊断肾病综合征儿童的照顾者进行的试验， UrApp在改善行为和生物学结局方面的疗效（目标1）。同时，我们将表演 进行过程评价，以确定对UrApp有效性的影响（目标2）。最后，我们将参与 护理人员利益相关者使用临床试验和过程评价的结果来完善UrApp并计划 未来以用户为中心的全面临床试验（目标3）。预期的结果是一部小说的发展， 实用的，基于技术的干预，准备在以用户为中心的临床试验中进行全面测试。这 申请人的特殊研究环境使其成为可能。埃默里儿科 肾病学是美国最大的儿科肾病学项目之一， 与其他儿科机构的研究合作，确保当前提案的可行性。一个强大 埃默里大学、亚特兰大儿童保健中心和格鲁吉亚理工学院之间的联盟 使UrApp的开发成为可能，并在临床试验研究、行为学、 科学、实施科学和生物统计学。导师制，沿着埃默里大学的课程， 将为申请人提供特殊的培训。此外，研究活动将提供王嘉实 在定性研究，混合方法分析，过程评估方法， 利益攸关方参与方法。这些新技能将增加申请人的临床背景， 实践，临床试验研究和定量研究，具有行为和实施方面的专业知识 以理工科为重这一方案的成功完成，将为王佳实提供一个与众不同的 技能，使一个独立的研究生涯，并产生第一个循证疾病之一 肾病综合征的治疗方法

Project Summary/Abstract This proposal is a multidisciplinary research and training plan to rigorously evaluate and refine a user-centered mobile application (app) for childhood nephrotic syndrome management and enable the applicant, Chia-shi Wang, to obtain the skills needed for an independent research career in kidney disease intervention development and implementation. The broad objectives of the research proposal are to improve self- management and clinical outcomes of childhood nephrotic syndrome, one of the most common chronic kidney diseases in children. The disease is characterized by a relapsing-remitting pattern in the majority of patients and has high rates of complications and treatment side effects. Vigilant home care is central to disease management, yet many families find it difficult to adhere with the demands. Our interdisciplinary team has built a novel mobile app (UrApp) to assist families with self-management. UrApp has excellent technical validity and was well-received by users in preliminary usability testing. In this proposal, we will conduct a pilot randomized trial in three pediatric sites among caregivers of children with newly diagnosed nephrotic syndrome to evaluate the efficacy of UrApp in improving behavioral and biologic outcomes (Aim 1). Concurrently, we will perform process evaluation to determine influences on the effectiveness of UrApp (Aim 2). Lastly, we will engage caregiver stakeholders to use the results of the clinical trial and process evaluation to refine UrApp and plan a future user-centered, full-scale clinical trial (Aim 3). The anticipated outcome is the development of a novel, pragmatic, technology-based intervention that is ready for full-scale testing in a user-centered clinical trial. This proposal is made possible by the applicant’s exceptional research environment. Emory’s Division of Pediatric Nephrology is one of the largest pediatric nephrology programs in the U.S. with many successful, extensive research collaborations with other pediatric institutions, ensuring the feasibility of the current proposal. A strong alliance between Emory University, Children’s Healthcare of Atlanta, and Georgia Institute of Technology enabled the developed of UrApp and provides multidisciplinary mentorship in clinical trial research, behavior science, implementation science, and biostatistics. The mentorship, along with the courses available at Emory, will provide exceptional training for the applicant. In addition, the research activities will provide Chia-shi Wang with hands-on training in qualitative research, mixed-methods analysis, process evaluation methodology, and stakeholder engagement methodology. These new skills will augment the applicant’s background in clinical practice, clinical trials research, and quantitative research with expertise in behavioral and implementation sciences. The successful completion of the proposal will therefore provide Chia-shi Wang with a distinctive skillset to enable an independent research career and produce one of the first evidence-based disease management tools for the childhood nephrotic syndrome population.