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

doi:10.1007/s10803-019-04088-9

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 journal › Article › peer-review

6 Scopus citations

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.

Original language	English (US)
Pages (from-to)	3786-3797
Number of pages	12
Journal	Journal of Autism and Developmental Disorders
Volume	49
Issue number	9
DOIs	https://doi.org/10.1007/s10803-019-04088-9
State	Published - Sep 15 2019

Keywords

ADHD
Autism
Consent
Neurodevelopmental disorders
Registry

ASJC Scopus subject areas

Developmental and Educational Psychology

Access to Document

10.1007/s10803-019-04088-9

Cite this

@article{b7ce7c5c150b4ad4be4267655cce81b5,

title = "Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders",

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 = "ADHD, Autism, Consent, Neurodevelopmental disorders, Registry",

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

note = "Funding Information: Funding This study was funded by the Intellectual Developmental Disabilities Research Center (U54 HD079123). Publisher Copyright: {\textcopyright} 2019, Springer Science+Business Media, LLC, part of Springer Nature.",

year = "2019",

month = sep,

day = "15",

doi = "10.1007/s10803-019-04088-9",

language = "English (US)",

volume = "49",

pages = "3786--3797",

journal = "Journal of Autism and Developmental Disorders",

issn = "0162-3257",

publisher = "Springer New York",

number = "9",

}

TY - JOUR

T1 - Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders

AU - Kalb, L.

AU - Jacobson, L.

AU - Zisman, C.

AU - Mahone, E.

AU - Landa, R.

AU - Azad, G.

AU - Menon, D.

AU - Singh, V.

AU - Zabel, A.

AU - Pritchard, A.

N1 - Funding Information: Funding This study was funded by the Intellectual Developmental Disabilities Research Center (U54 HD079123). Publisher Copyright: © 2019, Springer Science+Business Media, LLC, part of Springer Nature.

PY - 2019/9/15

Y1 - 2019/9/15

N2 - 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.

AB - 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.

KW - ADHD

KW - Autism

KW - Consent

KW - Neurodevelopmental disorders

KW - Registry

UR - http://www.scopus.com/inward/record.url?scp=85067065796&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85067065796&partnerID=8YFLogxK

U2 - 10.1007/s10803-019-04088-9

DO - 10.1007/s10803-019-04088-9

M3 - Article

C2 - 31172337

AN - SCOPUS:85067065796

SN - 0162-3257

VL - 49

SP - 3786

EP - 3797

JO - Journal of Autism and Developmental Disorders

JF - Journal of Autism and Developmental Disorders

IS - 9

ER -

Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders

Abstract

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this