Subjects

  • A Correction to this article was published on 01 May 2019

Abstract

Purpose

Recruitment of participants from diverse backgrounds is crucial to the generalizability of genetic research, but has proven challenging. We retrospectively evaluated recruitment methods used for a study on return of genetic results.

Methods

The costs of study design, development, and participant enrollment were calculated, and the characteristics of the participants enrolled through the seven recruitment methods were examined.

Results

A total of 1118 participants provided consent, a blood sample, and questionnaire data. The estimated cost across recruitment methods ranged from $579 to $1666 per participant and required a large recruitment team. Recruitment methods using flyers and staff networks were the most cost-efficient and resulted in the highest completion rate. Targeted sampling that emphasized the importance of Latino/a participation, utilization of translated materials, and in-person recruitments contributed to enrolling a demographically diverse sample.

Conclusions

Although all methods were deployed in the same hospital or neighborhood and shared the same staff, each recruitment method was different in terms of cost and characteristics of the enrolled participants, suggesting the importance of carefully choosing the recruitment methods based on the desired composition of the final study sample. This analysis provides information about the effectiveness and cost of different methods to recruit adults for genetic research.

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Change history

  • 01 May 2019

    The original version of this Article contained an error in the undergraduate degree awarded to the author Ian Halim and which was incorrectly given as BS. This has now been corrected to BA in both the PDF and HTML versions of the Article.

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Acknowledgements

Research was funded by U01HG008680 (principal investigators C.W., George Hripcsak, and A.G.G.). We would like to thank the participants of this research study. We also thank Evan Joiner, Emily Webster, Andria Reyes, Alejandra Aguirre, Nayrobi Ribera, Katrina Celis, Rachel Yarmolinsky, and Ilana Chilton for their guidance in the development and translation of the educational materials. We thank Ian Halim and Anoushka Sinha and the staff of the nephrology clinics for assistance with recruiting participants.

Author contributions

CW, AG, WKC, HMR, JW, MM conceived the study. JW, HMR, MM, EGC, AF, JM, KM, RLK, RA, PAM, MAO, YSS, AF, PSA, AG, CW, KK, WKC designed the study and developed study materials. JW, HMR, MM, RR, DC, SK, BHK, XM, MA, JN, KM, AE, BH, AS, IH, DF, NL, ME, ARP enrolled participants and collected data. JW, HMR, MM, JJT analyzed data and interpreted the results. JW, HMR, MM wrote the manuscript. All authors contributed and discussed the results and critically reviewed the manuscript

Author information

Author notes

  1. These authors contributed equally: Hila Milo Rasouly and Julia Wynn

Affiliations

  1. Department of Medicine, Columbia University Medical Center, New York, NY, USA

    • Hila Milo Rasouly PhD
    • , Maddalena Marasa MD
    • , Rachel Reingold BS
    • , Debanjana Chatterjee PhD
    • , Sheena Kapoor BS
    • , Stacy Piva BS
    • , Byum Hee Kil BS
    • , Xueru Mu MD
    • , Maria Alvarez MD
    • , Jordan Nestor MD
    • , Karla Mehl MD
    • , Nicole Cuneo BS
    • , Miguel Verbitsky PhD
    • , Katherine D. Crew MD
    • , Krzysztof Kiryluk MD, MS
    • , Ali G. Gharavi MD
    •  & Wendy K. Chung MD, PhD
  2. Department of Pediatrics, Columbia University Medical Center, New York, NY, USA

    • Julia Wynn MS, CGC
    • , Aileen Espinal BS
    • , Bianca Haser BS
    • , Manuela A. Orjuela MD, MPH
    •  & Wendy K. Chung MD, PhD
  3. Institute for Genomic Medicine, Columbia University Medical Center, New York, NY, USA

    • Anya Revah-Politi MS, CGC
    • , Natalie Lippa MS, CGC
    • , Michelle E. Ernst MS, CGC
    •  & Louise Bier MS, CGC
  4. College of Physician & Surgeons, Columbia University, New York, NY, USA

    • Anoushka Sinha BS
    • , Ian Halim BA
    •  & Jacqueline J. Thompson BS
  5. Department of Biomedical Informatics, Columbia University Irving Medical Center, New York, NY, USA

    • David Fasel BS
    • , Yat S. So BS
    •  & Chunhua Weng PhD
  6. Department of Neurology, Aging & Dementia, Columbia University Medical Center, New York, NY, USA

    • Elizabeth G. Cohn Ph.D
    • , Jill Goldman MS, CGC
    •  & Karen Marder MD, MPH
  7. Department of Psychiatry, Columbia University Medical Center, New York, NY, USA

    • Robert L. Klitzman MD
    •  & Paul S. Appelbaum MD
  8. Department of Epidemiology, Columbia University Medical Center, New York, NY, USA

    • Manuela A. Orjuela MD, MPH
  9. Irving Institute of Clinical and Translational Research, Columbia University Medical Center, New York, NY, USA

    • Alex Fedotov PhD
  10. Department of Sociomedical Sciences, Columbia University Mailman School of Public Health, New York, NY, USA

    • Karolynn Siegel PhD

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Disclosure

The authors declare no conflicts of interest.

Corresponding author

Correspondence to Wendy K. Chung MD, PhD.

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DOI

https://doi.org/10.1038/s41436-019-0497-y