Journal of Autism and Developmental Disorders

, Volume 46, Issue 2, pp 698–703 | Cite as

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

  • Irina ZamoraEmail author
  • Marian E. Williams
  • Marcia Higareda
  • Barbara Y. Wheeler
  • Pat Levitt
Brief Report


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., 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.


Autism spectrum disorder Recruitment Latino Genetic research 



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.


  1. Andreeva, V. A., & Unger, J. B. (2014). Determinants of host society acculturation and its relationship with health behaviors and outcomes: A new research and intervention frame work. Journal of Immigrant and Minority Health, pp. 1–7. doi: 10.1007/s10903-014-0104-x.
  2. Brown, D. R., Fouad, M. N., Basen-Engquist, K., & Tortolero-Luna, G. (2000). Recruitment and retention of minority women in cancer screening, prevention, and treatment trials. Annals of Epidemiology, 10(8), 13–21.CrossRefGoogle Scholar
  3. Cabral, D. N., Nápoles-Springer, A. M., Miike, R., McMillan, A., Sison, J. D., Wrensch, M. R., & Wiencke, J. K. (2003). Population-and community-based recruitment of African Americans and Latinos the San Francisco Bay area lung cancer study. American Journal of Epidemiology, 158(3), 272–279.CrossRefPubMedGoogle Scholar
  4. Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Surveillance Summaries, 63(SS02), 1–21.Google Scholar
  5. Constantino, J. N., & Gruber, C. P. (2005). Social responsiveness scale (SRS). Los Angeles, CA: Western Psychological Services.Google Scholar
  6. Corbie-Smith, G., Stephen, B., Thomas, S. B., & St. George, D. M. M. (2002). Distrust, race, and research. Archive Internal Medicine, 162, 2458–2463.CrossRefGoogle Scholar
  7. Dash, C., Wallington, S. F., Muthra, S., Dodson, E., Mandelblatt, J., & Adams-Campbell, L. L. (2014). Disparities in knowledge and willingness to donate research biospecimens: A mixed-methods study in an underserved urban community. Journal of Community Genetics, 5(4), 329–336.PubMedCentralCrossRefPubMedGoogle Scholar
  8. Flores, G., Fuentes-Afflick, E., Barbot, O., Carter-Pokras, O., Claudio, L., Lara, M., & Weitzman, M. (2002). The health of Latino children: Urgent priorities, unanswered questions, and a research agenda. The Journal of the American Medical Association, 288(1), 82–90.CrossRefPubMedGoogle Scholar
  9. Gorrindo, P., Williams, K. C., Lee, E. B., Walker, L. S., McGrew, S. G., & Levitt, P. (2012). Gastrointestinal dysfunction in autism: Parental report, clinical evaluation, and associated factors. Autism Research, 5(2), 101–108.PubMedCentralCrossRefPubMedGoogle Scholar
  10. Haack, L. M., Gerdes, A. C., & Lawton, K. E. (2014). Conducting research with Latino families: Examination of strategies to improve recruitment, retention, and satisfaction with an at-risk and underserved population. Journal of Child and Family Studies, 23(2), 410–421.CrossRefGoogle Scholar
  11. Heiat, A., Gross, C. P., & Krumholz, H. M. (2002). Representation of the elderly, women, and minorities in heart failure clinical trials. Archives of Internal Medicine, 162(15), 1–17.CrossRefGoogle Scholar
  12. Kao, B., Lobato, D., Grullon, E., Cheas, L., Plante, W., Seifer, R., & Canino, G. (2011). Recruiting Latino and non-Latino families in pediatric research: Considerations from a study on childhood disability. Journal of Pediatric Psychology, 36, 1093–1101.PubMedCentralCrossRefPubMedGoogle Scholar
  13. Kelly, M. L., Ackerman, P. D., & Friedman Ross, L. (2005). The participation of minorities in published pediatric research. Journal of the National Medical Association, 97, 777–783.PubMedCentralPubMedGoogle Scholar
  14. Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). Autism diagnostic observation schedule–WPS (ADOS–WPS). Los Angeles, CA: Western Psychological Services.Google Scholar
  15. Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 4, 1447–1453.CrossRefGoogle Scholar
  16. Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498.PubMedCentralCrossRefPubMedGoogle Scholar
  17. McClure, H. H., Snodgrass, J. J., Martinez, C. R, Jr, Eddy, J. M., McDade, T. W., Hyers, M. J., & Johnstone-Díaz, A. (2013). Integrating biomarkers into research with Latino immigrants in the United States. Advances in Anthropology, 3(2), 112–120.CrossRefGoogle Scholar
  18. McDonald, J. A., Weathers, B., Barg, F. K., Troxel, A. B., Shea, J. A., Bowen, D., & Halbert, C. H. (2012). Donation intentions for cancer genetics research among African Americans. Genetic Testing and Molecular Biomarkers, 16(4), 252–258.PubMedCentralCrossRefPubMedGoogle Scholar
  19. Newschaffer, C. J., Croen, L. A., Daniels, J., Giarelli, E., Grether, J. K., Levy, S. E., et al. (2007). The epidemiology of autism spectrum disorders. Annual Review of Public Health, 28, 235–258.CrossRefPubMedGoogle Scholar
  20. Rodriguez, E. M., Torres, E. T., & Erwin, D. O. (2013). Awareness and interest in biospecimen donation for cancer research: Views from gatekeepers and prospective participants in the Latino community. Journal of Community Genetics, 4(4), 461–468.PubMedCentralCrossRefPubMedGoogle Scholar
  21. Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2002). Racial differences in factors that influence the willingness to participate in medical research studies. Annual Epidemiology, 12, 248–256.CrossRefGoogle Scholar
  22. Suther, S., & Kiros, G. E. (2009). Barriers to the use of genetic testing: A study of racial and ethnic disparities. Genetics in Medicine, 11(9), 655–662.CrossRefPubMedGoogle Scholar
  23. Trottier, M., Roberts, W., Drmic, I., Scherer, S. W., Weksberg, R., Cytrynbaum, C., & Miller, F. A. (2013). Parents’ perspectives on participating in genetic research in autism. Journal of Autism and Developmental Disorders, 43(3), 556–568.CrossRefPubMedGoogle Scholar
  24. United States Department of Health and Human Services. (2013). Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research.
  25. United States Department of Health and Human Services, National Institutes of Health. (2010). A model for inclusion of minorities in genetic research20082010. NHGRI: Final report (Report No. 1R03HG005042-01).Google Scholar
  26. Walker, L. S., Caplan, A., & Rasquin, A. (2000). Manual for the Questionnaire on pediatric gastrointestinal symptoms. Nashville, TN: Department of Pediatrics, Vanderbilt University Medical Center.Google Scholar
  27. Wendler, D., Kington, R., Madans, J., Van Wye, G., Christ-Schmidt, H., Pratt, L. A., & Emanuel, E. (2005). Are racial and ethnic minorities less willing to participate in health research? PLoS Medicine, 3(2), 0201–0210.CrossRefGoogle Scholar
  28. Wheeler, B., Martinez, I., & Lajonchere, C. (2013). Community research ambassadors: A model for increasing hispanic participation in biomedical and genetics research on autism. Why we can’t wait: Conference to eliminate health disparities in genomic medicine. May 29–31, San Francisco, CA.Google Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  1. 1.USC University Center for Excellence in Developmental Disabilities, Children’s Hospital Los AngelesUniversity of Southern CaliforniaLos AngelesUSA
  2. 2.Boone Fetter Clinic, Children’s Hospital Los AngelesLos AngelesUSA
  3. 3.Western Governors UniversitySalt Lake CityUSA
  4. 4.Institute for the Developing MindChildren’s Hospital Los Angeles, Keck School of Medicine of University of Southern CaliforniaLos AngelesUSA

Personalised recommendations