4.5 Article

Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort

Journal

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
Volume 52, Issue 8, Pages 3383-3398

Publisher

SPRINGER/PLENUM PUBLISHERS
DOI: 10.1007/s10803-021-05218-y

Keywords

Autism; Electronic medical records; Validity; Parental report; SPARK cohort; Intellectual disability; Sex differences; Adults; Child; Regression; Language delay; Birth weight

Funding

  1. Simons Foundation

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The SPARK cohort study validated the accuracy of self-reported and caregiver-reported autism diagnoses by cross-referencing with electronic medical records, showing good consistency and confirming the validity of clinical information in the SPARK database.
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.

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