A Big Data Approach Toward the Development of a New Quantitative Measure of Restricted and Repetitive Behaviors

利用大数据方法开发限制性和重复性行为的新量化指标

• 批准号: 10066368
• 负责人: ANTONIO HARDAN
• 金额: $ 19.71万
• 依托单位: STANFORD UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-12-06 至 2022-10-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10066368
• 关键词: Address; Age; Agreement; Behavior assessment; Behavioral; Big Data; Child; Clinical; Clinical Research; Clinical Trials; Companions; Complex; Data Analyses; Data Analytics; Data Set; Development; Diagnostic; Ensure; Equation; Etiology; Evaluation; Factor Analysis; Family; Foundations; Future; Gender; Goals; Grain; Individual; Infrastructure; Interview; Investigation; Knowledge; Lasso; Learning; Linear Regressions; Literature; Longevity; Measurement; Measures; Methods; Modeling; Neurodevelopmental Disorder; Outcome; Parents; Phase; Population; Property; Psychometrics; Reporting; Research; Review Literature; Sample Size; Sampling; Sensory; Series; Source; Specific qualifier value; Statistical Data Interpretation; Statistical Methods; Stress; Structure; Surveys; Symptoms; Taxonomy; Testing; Update; Validation; adolescent with autism spectrum disorder; autism spectrum disorder; autistic children; base; behavioral construct; clinical outcome measures; clinically significant; compulsion; improved; individualized medicine; individuals with autism spectrum disorder; informant; innovation; instrument; interest; large datasets; learning strategy; motor behavior; programs; repetitive behavior; social; stress management; supervised learning; systematic review; tool; trait; Address; Age; Agreement; Behavior assessment; Behavioral; Big Data; Child; Clinical; Clinical Research; Clinical Trials; Companions; Complex; Data Analyses; Data Analytics; Data Set; Development; Diagnostic; Ensure; Equation; Etiology; Evaluation; Factor Analysis; Family; Foundations; Future; Gender; Goals; Grain; Individual; Infrastructure; Interview; Investigation; Knowledge; Lasso; Learning; Linear Regressions; Literature; Longevity; Measurement; Measures; Methods; Modeling; Neurodevelopmental Disorder; Outcome; Parents; Phase; Population; Property; Psychometrics; Reporting; Research; Review Literature; Sample Size; Sampling; Sensory; Series; Source; Specific qualifier value; Statistical Data Interpretation; Statistical Methods; Stress; Structure; Surveys; Symptoms; Taxonomy; Testing; Update; Validation; adolescent with autism spectrum disorder; autism spectrum disorder; autistic children; base; behavioral construct; clinical outcome measures; clinically significant; compulsion; improved; individualized medicine; individuals with autism spectrum disorder; informant; innovation; instrument; interest; large datasets; learning strategy; motor behavior; programs; repetitive behavior; social; stress management; supervised learning; systematic review; tool; trait

Project Summary Restricted and repetitive behaviors (RRB) are a core feature of autism spectrum disorder (ASD) and also occur across a range of other neurodevelopmental disorders. RRB present a major barrier to learning and adaptation, interfere with family functioning and present a source of considerable stress for parents. Despite their clinical significance, underlying mechanisms behind this complex behavioral domain are poorly understood and effective, targeted, individually tailored treatment options are currently lacking. One of the major barriers to moving the RRB research agenda forward has been the lack of clarity around the structure and conceptualization of RRB and the limitations of the currently available measures, particularly in terms of their (i) inability to comprehensively capture the full range of RRB and (ii) lack of sensitivity to treatment-related change. Therefore, the overarching aim of this project is to develop a parent report measure for comprehensive and quantitative RRB assessment applicable across clinical populations and across the life- span and useful in both etiological- and treatment-related research. In order to achieve this goal, we will first conduct advanced statistical analyses of multiple, large, high-quality datasets containing a range of currently available measures in order to achieve fine-grained differentiation between distinct RRB domains (Specific Aim 1) and to identify domains not adequately captured by the current measures (Specific Aim 2). The implementation of this initial phase of the project will ensure that robustness and generalizability of the factor structures for each individual measure across age, developmental level, gender, and diagnostic status, is established and that generalizable core RRB structure across the currently available RRB instruments is identified. Neither of these two different aspects have been comprehensively addressed before. Robust derived RRB factor structure, together with the identification of potential RRB domains that might be under- represented and not adequately depicted by the current instruments, together with the systematic review of the literature will inform the development of items of the new scale to capture the full range of RRB. The pilot version of the new scale will be psychometrically evaluated online within a large sample of children and adolescents with ASD (Specific Aim 3). This project will lay the foundation for future investigations aimed at further refinement of the newly developed informant-based scale and the development of a clinician interview and objective instrument, as well as their validation across ASD ansd neurodevelopmental disorders, and the testing of their utility as a clinical outcome measure.

项目摘要 受限制和重复行为（RRB）是自闭症谱系障碍（ASD）的核心特征，也发生 跨越其他神经发育障碍。 RRB提出了学习的主要障碍和 适应，干扰家庭功能，并给父母带来了相当大的压力。尽管 它们的临床意义，该复杂行为领域背后的基本机制很差 目前缺乏理解和有效，有针对性的，有针对性的单独量身定制的治疗选择。中的一个 移动RRB研究议程的主要障碍是对结构缺乏明确性 RRB的概念化以及当前可用措施的局限性，尤其是在 他们（i）无法全面捕获RRB的全部范围和（ii）对治疗相关的敏感性 改变。因此，该项目的总体目的是制定父母报告措施 全面和定量的RRB评估适用于临床人群以及整个生活 - 跨度，可用于病因和治疗相关的研究。为了实现这一目标，我们将首先 进行多个包含一系列当前范围的多个大型高质量数据集的高级统计分析 可用措施以实现不同的RRB域之间的细粒度差异（特定目的 1）并确定当前措施未充分捕获的域（特定目标2）。这 该项目的初始阶段的实施将确保因素的鲁棒性和概括性 跨年龄，发展水平，性别和诊断状态的每个单独措施的结构是 建立并在当前可用的RRB仪器中概括的核心RRB结构是 确定。以前，这两个不同的方面都没有得到全面解决。强壮的 得出的RRB因子结构，以及可能不足的潜在RRB域的鉴定 当前工具代表但未充分描绘 文献将为新量表的项目开发，以捕获RRB的全部范围。飞行员 新量表的版本将在大量儿童样本中进行心理评估， ASD的青少年（特定目标3）。该项目将为以后的调查奠定基础 进一步完善新开发的基于线人的量表和临床医生面试的发展 和客观工具，以及它们在ASD ANSD神经发育障碍中的验证 测试其效用作为临床结果度量。