title: Brief Report: Recruitment and Retention of Minority Children for Autism Research.
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.
authors.affiliation: 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.
authors.forename: Irina
authors.identifier: http://orcid.org/0000-0003-2029-5857
authors.initials: I
authors.lastname: Zamora
authors.affiliation: 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.
authors.forename: Marian E
authors.initials: ME
authors.lastname: Williams
authors.affiliation: Boone Fetter Clinic, Children's Hospital Los Angeles, Los Angeles, CA, USA.|Western Governors University, Salt Lake City, UT, USA.
authors.forename: Marcia
authors.initials: M
authors.lastname: Higareda
authors.affiliation: 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.
authors.forename: Barbara Y
authors.initials: BY
authors.lastname: Wheeler
authors.affiliation: 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.
authors.forename: Pat
authors.initials: P
authors.lastname: Levitt
mesh_terms: D000293:Adolescent; D001321:Autistic Disorder / Q000453:epidemiology / Q000208:ethnology*; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D008913:Minority Groups / Q000706:statistics & numerical data*; D018579:Patient Selection; D014481:United States
keywords: Autism spectrum disorder; Genetic research; Latino; Recruitment