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

Irina Zamora; Marian E Williams; Marcia Higareda; Barbara Y Wheeler; Pat Levitt

doi:10.1007/s10803-015-2603-6

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

J Autism Dev Disord. 2016 Feb;46(2):698-703. doi: 10.1007/s10803-015-2603-6.

Authors

Irina Zamora¹, Marian E Williams², Marcia Higareda^{3

4}, Barbara Y Wheeler⁵, Pat Levitt⁶

Affiliations

¹ USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles, University of Southern California, 4650 Sunset Blvd., MS#53, Los Angeles, CA, 90027, USA. izamora@chla.usc.edu.
² USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles, University of Southern California, 4650 Sunset Blvd., MS#53, Los Angeles, CA, 90027, USA. mwilliams@chla.usc.edu.
³ Boone Fetter Clinic, Children's Hospital Los Angeles, Los Angeles, CA, USA.
⁴ Western Governors University, Salt Lake City, UT, USA.
⁵ USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles, University of Southern California, 4650 Sunset Blvd., MS#53, Los Angeles, CA, 90027, USA. bwheeler@chla.usc.edu.
⁶ Institute for the Developing Mind, Children's Hospital Los Angeles, Keck School of Medicine of University of Southern California, 4650 Sunset Blvd, Los Angeles, CA, 90027, USA. plevitt@med.usc.edu.

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

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.

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

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Autistic Disorder / epidemiology
Autistic Disorder / ethnology*
Child
Female
Humans
Male
Minority Groups / statistics & numerical data*
Patient Selection*
United States

Grants and funding

R21 HD065289/HD/NICHD NIH HHS/United States