International Review of Research in Developmental Disabilities最新文献

Considerations for measuring individual outcomes across contexts in Down syndrome: Implications for research and clinical trials. 测量唐氏综合症患者不同情况下的个体结果的考虑因素：对研究和临床试验的影响。

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2022-01-01 Epub Date: 2022-08-19 DOI: 10.1016/bs.irrdd.2022.05.005

Anna J Esbensen, Emily K Schworer, Deborah J Fidler, Angela John Thurman

{"title":"Considerations for measuring individual outcomes across contexts in Down syndrome: Implications for research and clinical trials.","authors":"Anna J Esbensen, Emily K Schworer, Deborah J Fidler, Angela John Thurman","doi":"10.1016/bs.irrdd.2022.05.005","DOIUrl":"10.1016/bs.irrdd.2022.05.005","url":null,"abstract":"Individuals with Down syndrome (DS) are increasingly involved in clinical trials that target developmental outcomes, like cognition and behavior. The increased focus on treatment in DS has led to ongoing discussions regarding the selection of outcome measures using syndrome-informed criteria. This discourse is warranted as clinical trials can fail if the outcome measures selected are inappropriate for individuals with DS or do not take into account the behavioral phenotype commonly associated with DS. This review focuses on the challenges present in the measurement of outcomes in DS, with a specific focus on considerations made in evaluating cognitive, language, and behavioral/psychopathology outcomes. This review also provides a summary of recommendations for assessment of outcomes in these domains as well as recommendations for future research. The impact of physical health and assessment psychometrics on the measurement of outcomes is also reviewed.","PeriodicalId":44571,"journal":{"name":"International Review of Research in Developmental Disabilities","volume":"62 ","pages":"191-225"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9536481/pdf/nihms-1802707.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10382177","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Outreach and Engagement Efforts in Research on Down Syndrome: An NIH INCLUDE Working Group Consensus Statement. 唐氏综合症研究的外联和参与工作：美国国立卫生研究院工作组共识声明。

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2022-01-01 Epub Date: 2022-10-22 DOI: 10.1016/bs.irrdd.2022.09.006

Deborah J Fidler, Nathaniel Riggs, Anna J Esbensen, Colleen Jackson-Cook, Tracie Rosser, Annie Cohen

引用次数: 1

Cognitive outcome measures for tracking Alzheimer's disease in Down syndrome. 追踪唐氏综合症患者阿尔茨海默病的认知结果测量。

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2022-01-01 Epub Date: 2022-07-21 DOI: 10.1016/bs.irrdd.2022.05.006

Victoria Fleming, Christy L Hom, Isabel C H Clare, Shemaya L Hurd-Thomas, Sharon Krinsky-McHale, Benjamin Handen, Sigan L Hartley

{"title":"Cognitive outcome measures for tracking Alzheimer's disease in Down syndrome.","authors":"Victoria Fleming, Christy L Hom, Isabel C H Clare, Shemaya L Hurd-Thomas, Sharon Krinsky-McHale, Benjamin Handen, Sigan L Hartley","doi":"10.1016/bs.irrdd.2022.05.006","DOIUrl":"10.1016/bs.irrdd.2022.05.006","url":null,"abstract":"Down syndrome (DS) is now viewed as a genetic type of Alzheimer's disease (AD), given the near-universal presence of AD pathology in middle adulthood and the elevated risk for developing clinical AD in DS. As the field of DS prepares for AD clinical intervention trials, there is a strong need to identify cognitive measures that are specific and sensitive to the transition from being cognitively stable to the prodromal (e.g., Mild Cognitive Impairment-Down syndrome) and clinical AD (e.g., Dementia) stages of the disease in DS. It is also important to determine cognitive measures that map onto biomarkers of early AD pathology during the transition from the preclinical to the prodromal stage of the disease, as this transition period is likely to be targeted and tracked in AD clinical trials. The present chapter discusses the current state of research on cognitive measures that could be used to screen/select study participants and as potential outcome measures in future AD clinical trials with adults with DS. In this chapter, we also identify key challenges that need to be overcome and questions that need to be addressed by the DS field as it prepares for AD clinical trials in the coming years.","PeriodicalId":44571,"journal":{"name":"International Review of Research in Developmental Disabilities","volume":"62 ","pages":"227-263"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10312212/pdf/nihms-1910069.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9750431","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Contemporary Issues in Evaluating Treatment Outcomes in Neurodevelopmental Disorders 评价神经发育障碍治疗结果的当代问题

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2022-01-01 DOI: 10.1016/s2211-6095(22)x0002-x

引用次数: 0

U.S. school principals and special education legal knowledge: A scoping review 美国学校校长与特殊教育法律知识:范围检讨

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2021-01-01 DOI: 10.1016/bs.irrdd.2021.08.007

E. Casale, David Golann, E. LeMaster

引用次数: 0

Analytic approaches to heterogeneity in neurogenetic syndrome research 神经遗传综合征研究异质性的分析方法

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2021-01-01 DOI: 10.1016/bs.irrdd.2021.08.004

M. Prince, D. Fidler

引用次数: 4

Redressing the balance: A systematic review of positive psychology in the intellectual disability literature 纠正平衡:对智障文献中积极心理学的系统回顾

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2021-01-01 DOI: 10.1016/bs.irrdd.2021.08.003

C. Albaum, Victoria Chan, Teresa Sellitto, Nisha Vashi, R. Hastings, J. Weiss

引用次数: 2

The emergence of fine motor skills in children with Down syndrome 唐氏综合症儿童精细运动技能的出现

4区医学

International Review of Research in Developmental Disabilities Pub Date : 2021-01-01 DOI: 10.1016/bs.irrdd.2021.08.002

A. Needham, Eliza L. Nelson, A. D. Short, L. Daunhauer, D. Fidler

引用次数: 1

Series Page 系列页面

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International Review of Research in Developmental Disabilities Pub Date : 2021-01-01 DOI: 10.1016/s2211-6095(21)00031-2

引用次数: 0

Prevention Science and Research in Intellectual and Developmental Disabilities 智力和发育障碍的预防科学与研究

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International Review of Research in Developmental Disabilities Pub Date : 2021-01-01 DOI: 10.1016/s2211-6095(21)x0003-6

引用次数: 0