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Journal of Autism and Developmental Disorders

, Volume 49, Issue 9, pp 3786–3797 | Cite as

Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders

  • L. KalbEmail author
  • L. Jacobson
  • C. Zisman
  • E. Mahone
  • R. Landa
  • G. Azad
  • D. Menon
  • V. Singh
  • A. Zabel
  • A. Pritchard
Original Paper
  • 210 Downloads

Abstract

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.

Keywords

Consent Neurodevelopmental disorders Registry Autism ADHD 

Notes

Acknowledgments

The authors would like to acknowledge Kennedy Krieger Institute’s Intellectual and Developmental Disabilities Research Center (U54 HD079123) for supporting this work.

Author Contributions

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.

Funding

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.

Ethical Approval

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.

Informed Consent

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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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • L. Kalb
    • 1
    • 2
    • 4
    Email author
  • L. Jacobson
    • 1
    • 3
  • C. Zisman
    • 1
  • E. Mahone
    • 1
    • 3
  • R. Landa
    • 2
    • 3
  • G. Azad
    • 2
    • 4
  • D. Menon
    • 2
  • V. Singh
    • 2
  • A. Zabel
    • 1
    • 3
  • A. Pritchard
    • 1
    • 3
  1. 1.Department of NeuropsychologyKennedy Krieger InstituteBaltimoreUSA
  2. 2.Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreUSA
  3. 3.Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreUSA
  4. 4.Department of Mental HealthJohns Hopkins School of Public HealthBaltimoreUSA

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