Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders

L. Kalb, L. Jacobson, C. Zisman, E. Mahone, R. Landa, G. Azad, D. Menon, V. Singh, A. Zabel, A. Pritchard

Research output: Contribution to journalArticlepeer-review

6 Scopus citations


The goal of this study was to examine caregiver agreement to hear about local research opportunities by joining a clinical research registry. Data from this cross-sectional study were gathered, between 2014 and 2017, across two outpatient clinics: (1) a multidisciplinary Autism Spectrum Disorder (ASD) clinic (N = 5228) and (2) a general psychology clinic serving youth with, or at risk for, a neurodevelopmental disorder (NDD; N = 5040). Overall, more than 8 in 10 caregivers agreed to join the registry. Several child clinical characteristics, as well as racial and sociodemographic factors, were predictive of parental agreement. Findings suggest caregivers of youth with ASD and NDD are amenable to joining the local research enterprise, however further work is needed to understand why some caregivers decline.

Original languageEnglish (US)
Pages (from-to)3786-3797
Number of pages12
JournalJournal of Autism and Developmental Disorders
Issue number9
StatePublished - Sep 15 2019


  • ADHD
  • Autism
  • Consent
  • Neurodevelopmental disorders
  • Registry

ASJC Scopus subject areas

  • Developmental and Educational Psychology


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