A Cognitive Test Battery for Intellectual Disabilities

智力障碍认知测试电池

基本信息

批准号：
10456432
负责人：
DAVID R HESSL
金额：
$ 77.47万
依托单位：
UNIVERSITY OF CALIFORNIA AT DAVIS
依托单位国家：
美国
项目类别：
财政年份：
2014
资助国家：
美国
起止时间：
2014-09-22 至 2025-09-29
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10456432
关键词：
Adaptive Behaviors Administrative Supplement Adolescent Adult Affect Age Aging Alzheimer&apos s Disease Assessment tool Attention Attention deficit hyperactivity disorder Behavior Biological Markers Blood specimen Child Clinical Trials Cognition Cognitive Collaborations Collection Concept Formation Crystallization Data Data Collection Dementia Deterioration Development Disease Double-Blind Method Down Syndrome Elderly Episodic memory Executive Dysfunction Fragile X Syndrome Funding Future Goals Growth Impaired cognition Individual Infant Intellectual functioning disability Intervention Knowledge Language Language Disorders Liquid substance Longitudinal Studies Measurement Measures Memory Modification Natural History Nerve Degeneration Outcome Participant Patients Performance Persons Pharmaceutical Preparations Phenotype Placebo Effect Placebos Population Process Property Psychometrics Randomized Reading Research Research Personnel Risk Ritalin Sampling Severities Short-Term Memory Standardization Subgroup Syndrome Testing Time Toddler United States National Institutes of Health Validation Validity and Reliability Vocabulary Work autism spectrum disorder base clinical outcome measures cognitive change cognitive testing cohort comparative data standards executive function experience falls feasibility testing flexibility high risk improved intervention effect mathematical ability mental age population based primary outcome processing speed response young adult

项目摘要

Abstract The overarching goal of this R01 project (“A Cognitive Test Battery for Intellectual Disabilities”) is to develop and validate an assessment battery to measure cognitive outcomes of individuals with intellectual and developmental disability (IDD) in clinical trials. To achieve this goal, over the past 7 years we have been compiling data, making appropriate accommodations for this unique and challenging-to-test population, and carefully examining the psychometric properties (including feasibility, reliability, validity, and sensitivity to change) of the NIH Toolbox Cognitive Battery (NIHTB-CB), an iPad-based and norm-referenced set of tests measuring Fluid Reasoning (Processing Speed, Working Memory, Episodic Memory, Inhibitory Control and Attention, and Cognitive Flexibility) and Crystallized Language (Receptive Vocabulary and Reading) in children and youth with IDD, including those with fragile X syndrome (FXS), Down syndrome (DS), autism and idiopathic/other IDDs. The purpose of the present Administrative Supplement application is to request additional funds to extend data collection to older adults with IDD, including DS and FXS. Aging in IDDs is understudied, and older individuals are often excluded from research in part due to limitations in available assessment tools. The supplement will allow collection of NIHTB-CB data, standardized IQ and adaptive behavior data and measures from the ABC-Down Syndrome consortium harmonized core from 100 adult participants (50 with DS, 50 with FXS; ages 26 and up, stratified across young and older adult groups), as well as blood samples for biomarker characterization in collaboration with the ABC-DS group. Based upon the ABC- DC dementia assessment, we plan to include 20 with dementia to allow examination the potential sensitivity of the NIHTB-CB to dementia-related cognitive changes. Our extended data collection with adults will fall primarily within the scope of project Aims 1 and 3, which focus on optimization of the battery for lower functioning persons and sensitivity of the battery to developmental changes. In particular, we will examine the newly collected data from aging persons to determine whether modifications may be necessary, whether new tests may need to be developed, and whether it shows potential for detecting deterioration in cognition associated with aging or neurodegeneration, as in some participants with DS. As aging in DS is associated with high risk of early developing Alzheimer’s disease (AD), it is important to develop and validate cognitive tests that may be used to track the disease process and response to intervention. Cognition and neurodegeneration in older adults with FXS have been largely ignored, despite evidence of AD-related biomarker abnormalities and cognitive decline in some patients. The supplemental data collection from the FXS cohort will help to determine whether larger, more extensive longitudinal studies are justified to describe the natural history of this population and open the door for their participation in other research. The supplemental NIHTB-CB data collected from this aging group will provide critical preliminary information about its potential utility in future natural history or treatment studies.

抽象的 R01 项目（“智力障碍认知测试电池”）的总体目标是开发并验证评估组以衡量具有智力和智力的个人的结果发育障碍（IDD）的临床试验为了实现这一目标，在过去的 7 年里我们一直在努力。汇编数据，为这一独特且难以测试的人群提供适当的住宿，以及仔细检查心理测量特性（包括可行性、可靠性、有效性和敏感性） NIH Toolbox Cognitive Battery (NIHTB-CB) 的变更），这是一组基于 iPad 且参考规范的测试测量流体推理（处理速度、工作记忆、情景记忆、抑制控制和儿童的注意力和认知灵活性）和结晶语言（接受性词汇和阅读）患有 IDD 的青少年，包括患有脆性 X 综合症 (FXS)、唐氏综合症 (DS)、自闭症和本行政补充申请的目的是请求特发性/其他 IDD。额外资金将数据收集范围扩大到患有 IDD 的老年人，包括 IDD 中的 DS 和 FXS 老龄化。尚未得到充分研究，而且老年人常常被排除在研究之外，部分原因是现有的该补充品将允许收集 NIHTB-CB 数据、标准化智商和适应性。来自 ABC-唐氏综合症联盟协调核心的 100 名成年人的行为数据和测量参与者（50 名 DS，50 名 FXS；年龄 26 岁及以上，分为年轻人和老年人组），以及作为与 ABC-DS 小组合作进行生物标志物表征的血液样本基于 ABC-。 DC 痴呆症评估，我们计划纳入 20 名患有痴呆症的患者，以便检查其潜在敏感性 NIHTB-CB 与痴呆症相关的认知变化的研究主要集中在成年人身上。在项目目标 1 和 3 的范围内，重点是为低功能人群优化电池以及电池对发育变化的敏感性，我们将特别检查新收集的数据。从老年人那里确定是否需要进行修改，是否需要进行新的测试已开发出来，以及它是否具有检测与衰老或相关的认知退化的潜力神经退行性变，就像一些患有 DS 的参与者一样，因为 DS 中的衰老与早期的高风险有关。对于患有阿尔茨海默病 (AD) 的患者来说，开发和验证可用于诊断阿尔茨海默病 (AD) 的认知测试非常重要跟踪老年人的疾病过程和对干预的反应。尽管有证据表明 AD 相关生物标志物异常和认知能力下降，但 FXS 在很大程度上被忽视在某些患者中，从 FXS 队列中收集的补充数据将有助于确定是否存在更大的、有理由进行更广泛的纵向研究来描述该人群的自然历史并打开从该老龄群体收集的补充 NIHTB-CB 数据。将提供有关其在未来自然史或治疗研究中潜在用途的重要初步信息。