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SPARK队列中自闭症诊断与临床数据的验证

Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort.

作者信息

Fombonne Eric, Coppola Leigh, Mastel Sarah, O'Roak Brian J

机构信息

Department of Psychiatry, Oregon Health & Science University, Mail code: GH254, 3181 SW Sam Jackson Park Rd, Portland, OR, 97239, USA.

Department of Pediatrics, Oregon Health & Science University, Portland, USA.

出版信息

J Autism Dev Disord. 2022 Aug;52(8):3383-3398. doi: 10.1007/s10803-021-05218-y. Epub 2021 Jul 30.

Abstract

The SPARK cohort was established to facilitate recruitment in studies of large numbers of participants with autism spectrum disorder (ASD). Online registration requires participants to have received a lifetime professional diagnosis by health or school providers although diagnoses are not independently verified. This study was set to examine the validity of self- and caregiver-reported autism diagnoses. Electronic medical records (EMR) of 254 SPARK participants (77.6% male, age 10.7 years) were abstracted. Using two different methods, confirmation of ASD diagnosis in EMRs was obtained in 98.8% of cases. Core clinical features recorded in EMRs were typical of autism samples and showed very good agreement with SPARK cohort data, providing further evidence of the validity of clinical information in the SPARK database.

摘要

SPARK队列的建立是为了便于招募大量患有自闭症谱系障碍(ASD)的参与者进行研究。在线注册要求参与者已获得健康或学校机构给出的终身专业诊断,不过这些诊断并未经过独立核实。本研究旨在检验自我报告和照料者报告的自闭症诊断的有效性。提取了254名SPARK参与者(77.6%为男性,年龄10.7岁)的电子病历(EMR)。使用两种不同方法,在98.8%的病例中通过电子病历确认了ASD诊断。电子病历中记录的核心临床特征是自闭症样本的典型特征,并且与SPARK队列数据显示出非常好的一致性,这为SPARK数据库中临床信息的有效性提供了进一步证据。

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