Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders.
J Autism Dev Disord. 2019 Sep;49(9):3786-3797
Authors: Kalb L, Jacobson L, Zisman C, Mahone E, Landa R, Azad G, Menon D, Singh V, Zabel A, Pritchard A
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.
PMID: 31172337 [PubMed – indexed for MEDLINE]