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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.

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Acknowledgments

The authors would like to acknowledge Fiesta Educativa Inc for the support provided with the recruitment and retention of families and for facilitating collaboration and discussions between the research team and the families. Finally, we want to formally thank the families that volunteered their time to participate in this project. This research was supported in part by a grant from the EK Shriver National Institute of Child Health and Human Development R21 HD065289 and the Simms/Mann Chair in Developmental Neurogenetics.

Author Contributions

IZ, MH, and MW developed the study design; PL designed and implemented the larger study from which this study was developed; MH led data collection and management; MW led statistical analysis and data interpretation; IZ, MW, MH, BW, and PL participated in data interpretation; IZ, MW, BW, and PL participated in drafting the manuscript. All authors read and approved the final manuscript.

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Correspondence to Irina Zamora.

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Zamora, I., Williams, M.E., Higareda, M. et al. Brief Report: Recruitment and Retention of Minority Children for Autism Research. J Autism Dev Disord 46, 698–703 (2016). https://doi.org/10.1007/s10803-015-2603-6

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Keywords

  • Autism spectrum disorder
  • Recruitment
  • Latino
  • Genetic research