Transitioning to Adulthood: A Prospective Longitudinal Study

过渡到成年：一项前瞻性纵向研究

• 批准号: 9764160
• 负责人: Catherine Lord
• 金额: $ 63.37万
• 依托单位: UNIVERSITY OF CALIFORNIA LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9764160
• 关键词: Abate; Adolescence; Adult; Affect; Age; Behavior; Behavioral; Biological; Birth Order; Caregiver well-being; Caregivers; Caring; Characteristics; Child; Childhood; Clinical; Collection; Comorbidity; Data; Data Collection; Development; Developmental Delay Disorders; Diagnosis; Diagnostic; Dimensions; Disease; Emotional; Employment; Family; Genetic; Genotype; Goals; Hospitalization; Individual; Intellectual functioning disability; Knowledge; Language; Lead; Literature; Longevity; Longitudinal Studies; Longitudinal prospective study; Medical; Mental Health; Mosses; Outcome; Outcome Study; Parents; Participant; Personal Satisfaction; Phenotype; Population; Predictive Factor; Problem behavior; Prospective Studies; Quality of life; Recording of previous events; Rehabilitation therapy; Research; Resources; Risk Factors; Route; Sampling; School Health Services; Scientist; Seizures; Services; Severities; Siblings; Social support; Special Education; Symptoms; System; Time; Work; autism spectrum disorder; autistic children; clinical Diagnosis; clinical care; clinical phenotype; contextual factors; coping; early childhood; functional outcomes; improved; interest; negative affect; outcome prediction; pervasive developmental disorder not otherwise specified; proband; prospective; psychiatric symptom; public health relevance; recruit; repetitive behavior; response; service utilization; skills; social; social organization; young adult

 DESCRIPTION (provided by applicant): Though our knowledge about autism spectrum disorders (ASD) has grown considerably over the last two decades, we know little about the clinical phenotype in adulthood. Recent studies suggest that anywhere from 10-20% of those diagnosed with ASD obtain favorable outcomes in young adulthood. At the same time, a growing body of literature suggests that for many, outcomes worsen during the transition from school-based services to adulthood. The primary aim of this project is to accurately describe ASD in adulthood as well as the transition to adulthood and to identify mechanisms that contribute to positive and negative outcomes in individuals with ASD and their families. The transition to adulthood will be examined in a well-described longitudinal sample of children referred for possible ASD at age two, and a group of non-spectrum developmentally delayed controls most of whom have been followed for two decades. The current study will follow the probands as they transition to adulthood; families will receive annual assessment packets over the next 5 years and receive two face-to-face assessments 3 years apart. The longevity of this study and the families' continued participation will aid our recruitment efforts and should allow us to set up a framework for collection of biological samples from this extraordinary group of families which would then be made available to interested scientists. Findings will inform best practices for the care and support of adults with ASD and ultimately lead to improvements in the quality of life for individuals affected by ASD and their families.

 描述（由申请人提供）：尽管我们对自闭症谱系障碍（ASD）的了解在过去二十年中有了相当大的增长，但我们对成年期的临床表型知之甚少。最近的研究表明，10-20%被诊断患有ASD的人在年轻时获得了良好的结果。与此同时，越来越多的文献表明，对许多人来说，在从学校服务向成年过渡的过程中，结果会恶化。该项目的主要目的是准确描述成年期的ASD以及向成年期的过渡，并确定有助于ASD患者及其家庭积极和消极结果的机制。将在一个描述良好的纵向样本中检查向成年的过渡，这些样本是在两岁时因可能的ASD而被转诊的儿童，以及一组非谱系发育迟缓的对照组，其中大多数人已经被随访了二十年。目前的研究将跟踪先证者，因为他们过渡到成年;家庭将在未来5年内收到年度评估包，并接受两次面对面的评估3年。这项研究的长期性和家庭的持续参与将有助于我们的招募工作，并应使我们能够建立一个框架，从这一非凡的家庭群体中收集生物样本，然后将其提供给感兴趣的科学家。研究结果将为ASD成年人的护理和支持提供最佳实践，并最终改善ASD患者及其家人的生活质量。

项目成果

The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond.

• DOI: 10.1007/s10803-021-04904-1
• 发表时间: 2021-12
• 期刊: Journal of autism and developmental disorders
• 影响因子: 3.9
• 作者: Rosen NE;Lord C;Volkmar FR
• 通讯作者: Volkmar FR

SPARK: A US Cohort of 50,000 Families to Accelerate Autism Research.

• DOI: 10.1016/j.neuron.2018.01.015
• 发表时间: 2018-02-07
• 期刊: Neuron
• 影响因子: 16.2
• 作者: SPARK Consortium. Electronic address: [e-mail];SPARK Consortium
• 通讯作者: SPARK Consortium

Utility of the Autism Diagnostic Observation Schedule and the Brief Observation of Social and Communication Change for Measuring Outcomes for a Parent-Mediated Early Autism Intervention.

• DOI: 10.1002/aur.2449
• 发表时间: 2021-03
• 期刊: Autism research : official journal of the International Society for Autism Research
• 作者: Carruthers S;Charman T;El Hawi N;Kim YA;Randle R;Lord C;Pickles A;PACT Consortium
• 通讯作者: PACT Consortium

Taking Sleep Difficulties Seriously in Children With Neurodevelopmental Disorders and ASD.

认真对待患有神经发育障碍和自闭症谱系障碍的儿童的睡眠困难。

• DOI: 10.1542/peds.2018-2629
• 发表时间: 2019
• 期刊: Pediatrics
• 影响因子: 8
• 作者: Lord,Catherine

Damaging de novo mutations diminish motor skills in children on the autism spectrum.

• DOI: 10.1073/pnas.1715427115
• 发表时间: 2018-02-20
• 期刊: Proceedings of the National Academy of Sciences of the United States of America
• 影响因子: 11.1
• 作者: Buja A;Volfovsky N;Krieger AM;Lord C;Lash AE;Wigler M;Iossifov I
• 通讯作者: Iossifov I