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Recruitment and retention of US South Asians for an epidemiologic cohort: Experience from the MASALA study

  • Alka M. Kanaya (a1), Ann Chang (a1), Michael Schembri (a1), Ankita Puri-Taneja (a2), Shweta Srivastava (a1), Swapna S. Dave (a2), Evangeline N. Vijayakumar (a1), Zubaida Qamar (a1) (a3), Hemalatha D. Naik (a2), Faiza Siddiqui (a2) and Namratha R. Kandula (a2) (a4)...

Abstract

Introduction:

There are few longitudinal studies about South Asians (SAs) and little information about recruitment and retention approaches for this ethnic group.

Methods:

We followed 906 SAs enrolled in the Mediators of Atherosclerosis in South Asians Living in America (MASALA) cohort for 5 years. Surviving participants were invited for a second clinical exam from 2015 to 2018. A new wave of participants was recruited during 2017–2018. We assessed the yields from different methods of recruitment and retention.

Results:

A total of 759 (83%) completed the second clinical exam, and 258 new participants were enrolled. Providing a nearby community hospital location for the study exam, offering cab/shared ride reimbursement, and conducting home visits were the most effective methods for enhancing retention. New participant recruitment targeted women and individuals with lower socioeconomic status, and we found that participant referrals and active community engagement were most effective. Mailing invitational letters to those identified by electronic health records had very low yield.

Conclusion:

Recruitment and retention strategies that address transportation barriers and increase community engagement will help increase the representation of SAs in health research.

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Copyright

This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-ncnd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.

Corresponding author

*Address for correspondence:A. Kanaya, MD, 1545 Divisadero Street, Suite 311, San Francisco, CA 94115, USA. Email: alka.kanaya@ucsf.edu

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