Literature DB >> 31172337

Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders.

L Kalb1,2,3, L Jacobson4,5, C Zisman4, E Mahone4,5, R Landa6,5, G Azad6,7, D Menon6, V Singh6, A Zabel4,5, A Pritchard4,5.   

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.

Entities:  

Keywords:  ADHD; Autism; Consent; Neurodevelopmental disorders; Registry

Mesh:

Year:  2019        PMID: 31172337      PMCID: PMC6669084          DOI: 10.1007/s10803-019-04088-9

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  26 in total

1.  Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors.

Authors:  A R Giuliano; N Mokuau; C Hughes; G Tortolero-Luna; B Risendal; T E Prewitt; W J McCaskill-Stevens
Journal:  Ann Epidemiol       Date:  2000-11       Impact factor: 3.797

2.  On weighting the rates in non-response weights.

Authors:  Roderick J Little; Sonya Vartivarian
Journal:  Stat Med       Date:  2003-05-15       Impact factor: 2.373

3.  Recruitment and participation in clinical trials: socio-demographic, rural/urban, and health care access predictors.

Authors:  Claudia R Baquet; Patricia Commiskey; C Daniel Mullins; Shiraz I Mishra
Journal:  Cancer Detect Prev       Date:  2006-02-21

4.  Beating the barriers: recruitment of people with intellectual disability to participate in research.

Authors:  N Lennox; M Taylor; T Rey-Conde; C Bain; D M Purdie; F Boyle
Journal:  J Intellect Disabil Res       Date:  2005-04

5.  Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: associations with parental mental health and family functioning.

Authors:  S Herring; K Gray; J Taffe; B Tonge; D Sweeney; S Einfeld
Journal:  J Intellect Disabil Res       Date:  2006-12

6.  The influence of protocol pain and risk on patients' willingness to consent for clinical studies: a randomized trial.

Authors:  Tanja A Treschan; Thomas Scheck; Alexander Kober; Edith Fleischmann; Beatrice Birkenberg; Brigitte Petschnigg; Ozan Akça; Franz X Lackner; Elisabeth Jandl-Jager; Daniel I Sessler
Journal:  Anesth Analg       Date:  2003-02       Impact factor: 5.108

7.  Participation of children in clinical research: factors that influence a parent's decision to consent.

Authors:  Alan R Tait; Terri Voepel-Lewis; Shobha Malviya
Journal:  Anesthesiology       Date:  2003-10       Impact factor: 7.892

8.  Challenges in evaluating psychosocial interventions for Autistic Spectrum Disorders.

Authors:  Catherine Lord; Ann Wagner; Sally Rogers; Peter Szatmari; Michael Aman; Tony Charman; Geraldine Dawson; V Mark Durand; Lee Grossman; Donald Guthrie; Sandra Harris; Connie Kasari; Lee Marcus; Susan Murphy; Samuel Odom; Andrew Pickles; Lawrence Scahill; Evelyn Shaw; Bryna Siegel; Marian Sigman; Wendy Stone; Tristram Smith; Paul Yoder
Journal:  J Autism Dev Disord       Date:  2005-12

9.  Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease.

Authors:  Brian Buckley; Andrew W Murphy; Molly Byrne; Liam Glynn
Journal:  Heart       Date:  2007-05-13       Impact factor: 5.994

10.  Patterns of consent in epidemiologic research: evidence from over 25,000 responders.

Authors:  Kate M Dunn; Kelvin Jordan; Rosie J Lacey; Mark Shapley; Clare Jinks
Journal:  Am J Epidemiol       Date:  2004-06-01       Impact factor: 4.897

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  3 in total

1.  Caregiver Perspectives on Informed Consent for a Pediatric Learning Healthcare System Model of Care.

Authors:  A E Pritchard; T A Zabel; L A Jacobson; E Jones; C Holingue; L G Kalb
Journal:  AJOB Empir Bioeth       Date:  2020-10-26

2.  Dysregulation in Children and Adolescents Presenting to a Multidisciplinary Autism Clinic.

Authors:  Roma A Vasa; Vini Singh; Rachel G McDonald; Carla Mazefsky; Ji Su Hong; Amy Keefer
Journal:  J Autism Dev Disord       Date:  2021-05-19

3.  Characteristics of the autism spectrum disorder gastrointestinal and related behaviors inventory in children.

Authors:  Calliope Holingue; Luther G Kalb; Rashelle Musci; Colleen Lukens; Li-Ching Lee; Jamie Kaczaniuk; Michelle Landrum; Timothy Buie; M Daniele Fallin
Journal:  Autism Res       Date:  2022-03-18       Impact factor: 4.633

  3 in total

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