Literature DB >> 26404703

Brief Report: Recruitment and Retention of Minority Children for Autism Research.

Irina Zamora1, Marian E Williams2, Marcia Higareda3,4, Barbara Y Wheeler5, Pat Levitt6.   

Abstract

Given the underrepresentation of ethnic minorities in health research (Heiat et al. in Arch Int Med 162(15):1-17, 2002; Kelly et al. in J Nat Med Assoc 97:777-783, 2005; United States Department of Health and Human Services. Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research. http://orwh.od.nih.gov/research/inclusion/reports.asp , 2013), this study evaluated promising strategies to effectively recruit Latinos into genetic research on autism spectrum disorders (ASD). The study included 97 children, aged 5-17 years, with ASD; 82.5 % of the participants were identified as Latino/Hispanic. Traditional and culture-specific recruitment and retention strategies were compared between the Latino and non-Latino groups. Culture-specific, parent-centered approaches were found to be successful in engaging and retaining Latino participants for research involving genetic testing.

Entities:  

Keywords:  Autism spectrum disorder; Genetic research; Latino; Recruitment

Mesh:

Year:  2016        PMID: 26404703     DOI: 10.1007/s10803-015-2603-6

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


  20 in total

1.  Recruitment and retention of minority women in cancer screening, prevention, and treatment trials.

Authors:  D R Brown; M N Fouad; K Basen-Engquist; G Tortolero-Luna
Journal:  Ann Epidemiol       Date:  2000-11       Impact factor: 3.797

2.  Distrust, race, and research.

Authors:  Giselle Corbie-Smith; Stephen B Thomas; Diane Marie M St George
Journal:  Arch Intern Med       Date:  2002-11-25

3.  Determinants of Host Society Acculturation and Its Relationship with Health Behaviors and Outcomes: A New Research and Intervention Framework.

Authors:  Valentina A Andreeva; Jennifer B Unger
Journal:  J Immigr Minor Health       Date:  2015-10

4.  Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.

Authors:  Chiranjeev Dash; Sherrie F Wallington; Sherieda Muthra; Everett Dodson; Jeanne Mandelblatt; Lucile L Adams-Campbell
Journal:  J Community Genet       Date:  2014-04-26

5.  Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2010.

Authors: 
Journal:  MMWR Surveill Summ       Date:  2014-03-28

6.  Recruiting Latino and non-Latino families in pediatric research: considerations from a study on childhood disability.

Authors:  Barbara Kao; Debra Lobato; Edicta Grullon; Lydia Cheas; Wendy Plante; Ronald Seifer; Glorisa Canino
Journal:  J Pediatr Psychol       Date:  2011-06-17

7.  The participation of minorities in published pediatric research.

Authors:  Michael L Kelly; Paul D Ackerman; Lainie Friedman Ross
Journal:  J Natl Med Assoc       Date:  2005-06       Impact factor: 1.798

8.  The health of Latino children: urgent priorities, unanswered questions, and a research agenda.

Authors:  Glenn Flores; Elena Fuentes-Afflick; Oxiris Barbot; Olivia Carter-Pokras; Luz Claudio; Marielena Lara; Jennie A McLaurin; Lee Pachter; Francisco J Ramos-Gomez; Fernando Mendoza; R Burciaga Valdez; Antonia M Villarruel; Ruth E Zambrana; Robert Greenberg; Michael Weitzman; Francisco J Ramos Gomez
Journal:  JAMA       Date:  2002-07-03       Impact factor: 56.272

9.  Racial/ethnic disparities in the identification of children with autism spectrum disorders.

Authors:  David S Mandell; Lisa D Wiggins; Laura Arnstein Carpenter; Julie Daniels; Carolyn DiGuiseppi; Maureen S Durkin; Ellen Giarelli; Michael J Morrier; Joyce S Nicholas; Jennifer A Pinto-Martin; Paul T Shattuck; Kathleen C Thomas; Marshalyn Yeargin-Allsopp; Russell S Kirby
Journal:  Am J Public Health       Date:  2008-12-23       Impact factor: 9.308

10.  Awareness and interest in biospecimen donation for cancer research: views from gatekeepers and prospective participants in the Latino community.

Authors:  Elisa Marie Rodriguez; Essie T Torres; Deborah O Erwin
Journal:  J Community Genet       Date:  2013-06-04
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  10 in total

1.  Assessment of Language Abilities in Minority Adolescents and Young Adults With Autism Spectrum Disorder and Extensive Special Education Needs: A Pilot Study.

Authors:  Teresa M Girolamo; Mabel L Rice; Steven F Warren
Journal:  Am J Speech Lang Pathol       Date:  2020-04-23       Impact factor: 2.408

2.  Amor and Social Stigma: ASD Beliefs Among Immigrant Mexican Parents.

Authors:  Shana R Cohen; Jessica Miguel
Journal:  J Autism Dev Disord       Date:  2018-06

3.  Examining the Efficacy of a Family Peer Advocate Model for Black and Hispanic Caregivers of Children with Autism Spectrum Disorder.

Authors:  J M Jamison; E Fourie; P M Siper; M P Trelles; Julia George-Jones; A Buxbaum Grice; J Krata; E Holl; J Shaoul; B Hernandez; L Mitchell; M M McKay; J D Buxbaum; Alexander Kolevzon
Journal:  J Autism Dev Disord       Date:  2017-05

4.  Examining the Cascade of Participant Attrition in a Genomic Medicine Research Study: Barriers and Facilitators to Achieving Diversity.

Authors:  Elizabeth G Moore; Myra Roche; Christine Rini; Edward W Corty; Zahra Girnary; Julianne M O'Daniel; Feng-Chang Lin; Giselle Corbie-Smith; James P Evans; Gail E Henderson; Jonathan S Berg
Journal:  Public Health Genomics       Date:  2018-08-07       Impact factor: 2.000

5.  Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study.

Authors:  Carolyn E B McCormick; Brian C Kavanaugh; Danielle Sipsock; Giulia Righi; Lindsay M Oberman; Daniel Moreno De Luca; Ece D Gamsiz Uzun; Carrie R Best; Beth A Jerskey; Joanne G Quinn; Susan B Jewel; Pei-Chi Wu; Rebecca L McLean; Todd P Levine; Hasmik Tokadjian; Kayla A Perkins; Elaine B Clarke; Brittany Dunn; Alan H Gerber; Elena J Tenenbaum; Thomas F Anders; Stephen J Sheinkopf; Eric M Morrow
Journal:  Autism Res       Date:  2020-01-20       Impact factor: 5.216

6.  Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder.

Authors:  Yonah Hendel; Gal Meiri; Hagit Flusser; Analya Michaelovski; Ilan Dinstein; Idan Menashe
Journal:  J Autism Dev Disord       Date:  2021-04

7.  Inclusion of special populations in clinical research: important considerations and guidelines.

Authors:  Stuart S Winter; Janet M Page-Reeves; Kimberly A Page; Emily Haozous; Angelica Solares; Carla Nicole Cordova; Richard S Larson
Journal:  J Clin Transl Res       Date:  2018-04-07

8.  Use of a Best Practice Alert (BPA) to Increase Diversity Within a US-Based Autism Research Cohort.

Authors:  Gabrielle F Duhon; Andrea R Simon; Danica L Limon; Kelli L Ahmed; Gabriela Marzano; Robin P Goin-Kochel
Journal:  J Autism Dev Disord       Date:  2022-01-08

9.  Adapting parent-focused interventions for diverse caregivers of children with intellectual and developmental disabilities: Lessons learned during global crises.

Authors:  Sandra B Vanegas; Ana D Dueñas; Megan Kunze; Yue Xu
Journal:  J Policy Pract Intellect Disabil       Date:  2022

10.  Evaluating Two Common Strategies for Research Participant Recruitment Into Autism Studies: Observational Study.

Authors:  Kelli L Ahmed; Andrea R Simon; Jack R Dempsey; Rodney C Samaco; Robin P Goin-Kochel
Journal:  J Med Internet Res       Date:  2020-09-24       Impact factor: 5.428

  10 in total

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