ArticleBMJ open2015
Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children with valid ASD diagnoses?
Article in BMJ open, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study.Health technology assessment (Winchester, England) · 2021Pooled it
- The effectiveness of parent training for children with autism spectrum disorder: a systematic review and meta-analyses.BMC psychiatry · 2020Pooled it
- Typical Pubertal Timing in an Australian Population of Girls and Boys with Autism Spectrum Disorder.Journal of autism and developmental disorders · 2017Pooled it
- AI and neuroimaging in autism spectrum disorder: advances in diagnosis, methodological challenges and future directions.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Review
- Developmental Impacts of Early Sensory Patterns on School-Age Adaptive, Maladaptive, and Participation Outcomes in Autistic and Non-autistic Children.Journal of autism and developmental disorders · 2025Article
- Parenting Self-Efficacy and Psychological Distress in Parents of Children with an Autism Spectrum Disorder.Journal of autism and developmental disorders · 2024Article
- Developmental signs of ADHD and autism: a prospective investigation in 3623 children.European child & adolescent psychiatry · 2023Article
- Review
- Reported autism diagnosis is associated with psychotic-like symptoms in the Adolescent Brain Cognitive Development cohort.European child & adolescent psychiatry · 2022Article
- Caregiver- and Child-Reported Anxiety Using an Autism-Specific Measure: Measurement Properties and Correlates of the Anxiety Scale for Children with Autism Spectrum Disorder (ASC-ASD) in Verbal Young People with ASD.Journal of autism and developmental disorders · 2021Article
- Article
- Autism spectrum disorder: Consensus guidelines on assessment, treatment and research from the British Association for Psychopharmacology.Journal of psychopharmacology (Oxford, England) · 2018Review
- Clinician-delivered cognitive training for children with attention problems: effects on cognition and behavior from the ThinkRx randomized controlled trial.Neuropsychiatric disease and treatment · 2018Article
- Brief Report: Sexual Attraction and Relationships in Adolescents with Autism.Journal of autism and developmental disorders · 2017Article
- Autism genetics: opportunities and challenges for clinical translation.Nature reviews. Genetics · 2017Review
- Factors Affecting Age at ASD Diagnosis in UK: No Evidence that Diagnosis Age has Decreased Between 2004 and 2014.Journal of autism and developmental disorders · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
settingRecruitment 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.
results1000 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.
conclusionsASD-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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