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

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 限制和重复行为（RRB）是自闭症谱系障碍（ASD）的核心特征，也会发生 一系列其他神经发育障碍。RRB是学习的主要障碍， 适应，干扰家庭运作，并给父母带来相当大的压力。尽管 它们的临床意义，这一复杂行为域背后的潜在机制， 目前缺乏理解和有效的、有针对性的、个性化的治疗选择。之一 推进RRB研究议程的主要障碍是缺乏明确的结构 和概念化，以及现有措施的局限性，特别是在 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缺乏 变化因此，本项目的总体目标是制定一个家长报告措施， 适用于临床人群和整个生命周期的全面定量RRB评估- 跨度和有用的病因学和治疗相关的研究。为了实现这一目标，我们将首先 对多个大型高质量数据集进行高级统计分析，这些数据集包含一系列当前 为了实现不同RRB域之间的细粒度区分（具体目标 1)并确定目前措施未充分涵盖的领域（具体目标2）。的 项目这一初步阶段实施将确保这些因素的健全性和普遍性 针对年龄、发育水平、性别和诊断状态的每个单独测量的结构， 已建立，目前可用的RRB工具中可推广的RRB核心结构， 鉴定这两个不同的方面以前都没有得到全面的处理。鲁棒 衍生的RRB因子结构，以及可能低于- 现有文书所代表但未充分描述的问题，以及对 文献将为制定新量表的项目提供信息，以涵盖RRB的全部范围。试点 新量表的一个版本将在网上对大量儿童样本进行心理测量评估， ASD青少年（具体目标3）。该项目将为今后的调查奠定基础， 进一步完善新开发的基于知情者的量表和临床医生访谈的开发 和客观的工具，以及它们在ASD和神经发育障碍中的验证， 测试它们作为临床结果测量的效用。

项目成果

Characterizing subdomains of insistence on sameness in autistic youth.

描述自闭症青少年坚持同一性的子领域。

• DOI: 10.1002/aur.3033
• 发表时间: 2023
• 期刊: Autism research : official journal of the International Society for Autism Research
• 作者: Spackman,Emily;Smillie,LukeD;Frazier,ThomasW;Hardan,AntonioY;Uljarević,Mirko
• 通讯作者: Uljarević,Mirko

Using the big data approach to clarify the structure of restricted and repetitive behaviors across the most commonly used autism spectrum disorder measures.

• DOI: 10.1186/s13229-021-00419-9
• 发表时间: 2021-05-27
• 期刊: Molecular autism
• 影响因子: 6.2
• 作者: Uljarević M;Jo B;Frazier TW;Scahill L;Youngstrom EA;Hardan AY
• 通讯作者: Hardan AY

Characterizing restricted and unusual interests in autistic youth.

描述自闭症青少年的有限和不寻常的兴趣。

• DOI: 10.1002/aur.2863
• 发表时间: 2023
• 期刊: Autism research : official journal of the International Society for Autism Research
• 作者: Spackman,Emily;Smillie,LukeD;Frazier,ThomasW;Hardan,AntonioY;Alvares,GailA;Whitehouse,Andrew;Uljarević,Mirko
• 通讯作者: Uljarević,Mirko

Subdomains of restricted and repetitive behaviors within autism: Exploratory structural equation modeling using the diagnostic interview for social and communication disorders.

• DOI: 10.1002/aur.2687
• 发表时间: 2022-05
• 期刊: AUTISM RESEARCH
• 影响因子: 4.7
• 作者: Uljarevic, Mirko;Carrington, Sarah J.;Hardan, Antonio Y.;Leekam, Susan R.
• 通讯作者: Leekam, Susan R.

Dimensional Assessment of Restricted and Repetitive Behaviors: Development and Preliminary Validation of a New Measure.

受限和重复行为的维度评估：新措施的开发和初步验证。

• DOI: 10.1016/j.jaac.2022.07.863
• 发表时间: 2023
• 期刊: Journal of the American Academy of Child and Adolescent Psychiatry
• 影响因子: 13.3
• 作者: Uljarević,Mirko;Frazier,ThomasW;Jo,Booil;Scahill,Lawrence;Youngstrom,EricA;Spackman,Emily;Phillips,JenniferM;Billingham,Wesley;Hardan,Antonio
• 通讯作者: Hardan,Antonio