Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders
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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.
KeywordsConsent Neurodevelopmental disorders Registry Autism ADHD
The authors would like to acknowledge Kennedy Krieger Institute’s Intellectual and Developmental Disabilities Research Center (U54 HD079123) for supporting this work.
LK was responsible for conducting the analyses. LK, LJ, GA, DM, VS, and AZ assisted with data acquisition. LK and AP were responsible for developing the initial study questions. All authors contributed to the study design, writing, and interpretation.
This study was funded by the Intellectual Developmental Disabilities Research Center (U54 HD079123).
Compliance with Ethical Standards
Conflict of interest
No conflicts exists. Author D has provided consultation to Takeda Pharmaceuticals, however those services had no bearing, influence, or relevance to the current study.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
For this type of study, a retrospective chart review, formal consent is not required. As such, the authors received a waiver of consent from the governing IRB.
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