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Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children
F Warnell1, B George1, H McConachie2
1Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, UK.
Insights
The Autism Spectrum Database-UK (ASD-UK) successfully recruited 1000 families, demonstrating high reliability in parent-reported diagnoses and broad representativeness of UK children with Autism Spectrum Disorder (ASD).
Area of Science:
- Pediatric Neurology
- Developmental Psychology
- Clinical Genetics
Background:
- The Autism Spectrum Database-UK (ASD-UK) was established to create a comprehensive resource for autism research.
- Understanding the characteristics of participating families is crucial for ensuring the generalizability of research findings.
Purpose of the Study:
- To detail the establishment and methodology of the ASD-UK.
- To assess the representativeness of the initial 1000 ASD-UK participants compared to non-participants.
- To evaluate the reliability and validity of parent-reported Autism Spectrum Disorder (ASD) diagnoses within the database.
- To compare ASD-UK participants with children from other ASD cohorts and epidemiological studies.
Main Methods:
- Recruitment involved a UK-wide network of child health teams and self-referral.
- Data collection utilized parent/carer questionnaires for children aged 2-16 years with ASD, supplemented by professional reports.
- Comparisons were made between participants and non-participants, and with data from the Database of children with ASD living in the North East (Dasl(n)e) and epidemiological studies.
Main Results:
- 1000 families registered within 30 months; participants and non-participants showed similar demographics and social deprivation.
- Parent-reported ASD diagnoses demonstrated high reliability (>96%) against clinical reports, with no false positives identified.
- ASD-UK families were found to be representative of the broader UK population of children with ASD when compared to Dasl(n)e and epidemiological cohorts.
Conclusions:
- The ASD-UK database effectively includes families with parent-reported data that are broadly representative of UK children with ASD.
- The database continues to grow, with over 3000 families now available for autism research recruitment.
- ASD-UK provides a valuable, representative resource for advancing autism research in the UK.
Objectives:
(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.
Setting:
Recruitment through a network of 50 UK child health teams and self-referral.
Patients:
Parents/carers with a child with ASD, aged 2-16 years, completed questionnaires about ASD and some gave professionals' reports about their children.
Results:
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 children was very high when compared with clinical reports (over 96%); no database child without ASD was identified. A comparison of gender, ASD diagnosis, age at diagnosis, school placement, learning disability, and deprivation score of children and families from ASD-UK with 1084 children and families from Dasl(n)e, and families from population studies, showed that ASD-UK families are representative of families of children with ASD overall.
Conclusions:
ASD-UK includes families providing parent-reported data about their child and family, who appear to be broadly representative of UK children with ASD. Families continue to join the databases and more than 3000 families can now be contacted by researchers about UK autism research.
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