Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children with valid ASD diagnoses?

BMJ Open
Frances WarnellJeremy R Parr

Abstract

(1) Describe how the Autism Spectrum Database-UK (ASD-UK) was established; (2) investigate the representativeness of the first 1000 children and families who participated, compared to those who chose not to; (3) investigate the reliability of the parent-reported Autism Spectrum Disorder (ASD) diagnoses, and present evidence about the validity of diagnoses, that is, whether children recruited actually have an ASD; (4) present evidence about the representativeness of the ASD-UK children and families, by comparing their characteristics with the first 1000 children and families from the regional Database of children with ASD living in the North East (Dasl(n)e), and children and families identified from epidemiological studies. Recruitment through a network of 50 UK child health teams and self-referral. Parents/carers with a child with ASD, aged 2-16 years, completed questionnaires about ASD and some gave professionals' reports about their children. 1000 families registered with ASD-UK in 30 months. Children of families who participated, and of the 208 who chose not to, were found to be very similar on: gender ratio, year of birth, ASD diagnosis and social deprivation score. The reliability of parent-reported ASD diagnoses of childr...Continue Reading

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Citations

Feb 19, 2016·Autism Research : Official Journal of the International Society for Autism Research·Jacqui RodgersJeremy R Parr
Apr 2, 2016·Journal of Autism and Developmental Disorders·Denise BrettJeremy R Parr
Aug 17, 2016·Autism Research : Official Journal of the International Society for Autism Research·Magdalena GlodJacqui Rodgers
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Sep 1, 2017·Journal of Autism and Developmental Disorders·Tamara MayKatrina Williams
Feb 11, 2018·Autism Research : Official Journal of the International Society for Autism Research·Alexandra M PetrouJeremy R Parr
Mar 4, 2020·Autism Research : Official Journal of the International Society for Autism Research·Tamara MayKatrina Williams
Apr 15, 2020·Autism Research : Official Journal of the International Society for Autism Research·Alexandra SchnabelDavid W Austin
Mar 28, 2017·Journal of Autism and Developmental Disorders·Tamara MayKatrina Williams
Jan 15, 2021·Autism Research : Official Journal of the International Society for Autism Research·Tamara MayKatrina Williams
Mar 2, 2021·European Child & Adolescent Psychiatry·Amandeep JutlaJennifer H Foss-Feig
Oct 13, 2021·Autism Research : Official Journal of the International Society for Autism Research·Chang ShuUNKNOWN SPARK Consortium
Nov 28, 2018·Pediatrics·Michael D KoganMichael C Lu

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