Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort

Eric Fombonne; Leigh Coppola; Sarah Mastel; Brian J. O’Roak

doi:10.1007/s10803-021-05218-y

Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort

Eric Fombonne, Leigh Coppola, Sarah Mastel, Brian J. O’Roak

Research output: Contribution to journal › Article › peer-review

41 Scopus citations

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.

Original language	English (US)
Pages (from-to)	3383-3398
Number of pages	16
Journal	Journal of autism and developmental disorders
Volume	52
Issue number	8
DOIs	https://doi.org/10.1007/s10803-021-05218-y
State	Published - Aug 2022

Keywords

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

ASJC Scopus subject areas

Developmental and Educational Psychology

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10.1007/s10803-021-05218-y

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title = "Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort",

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.",

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

author = "Eric Fombonne and Leigh Coppola and Sarah Mastel and O{\textquoteright}Roak, {Brian J.}",

note = "Publisher Copyright: {\textcopyright} 2021, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.",

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AU - Coppola, Leigh

AU - Mastel, Sarah

AU - O’Roak, Brian J.

PY - 2022/8

Y1 - 2022/8

N2 - 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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KW - Adults

KW - Autism

KW - Birth weight

KW - Child

KW - Electronic medical records

KW - Intellectual disability

KW - Language delay

KW - Parental report

KW - Regression

KW - SPARK cohort

KW - Sex differences

KW - Validity

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Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort

Abstract

Keywords

ASJC Scopus subject areas

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