July 2019
Volume 60, Issue 9
Free
ARVO Annual Meeting Abstract  |   July 2019
An Evaluation of Recruitment Methods for a Large Glaucoma Genetics Study of African Americans
Author Affiliations & Notes
  • Rebecca Janet Salowe
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Sayaka Merriam
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Roy Lee
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Marquis Vaughn
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Ava Kikut
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Emily Becker
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Dave W Collins
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Harini V Gudiseva
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Qi Cui
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Victoria Addis
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • PRITHVI SANKAR
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Eydie G Miller-Ellis
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Maxwell Pistilli
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Maureen G Maguire
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Joan M O'Brien
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Footnotes
    Commercial Relationships   Rebecca Salowe, None; Sayaka Merriam, None; Roy Lee, None; Marquis Vaughn, None; Ava Kikut, None; Emily Becker, None; Dave Collins, None; Harini Gudiseva, None; Qi Cui, None; Victoria Addis, None; PRITHVI SANKAR, None; Eydie Miller-Ellis, None; Maxwell Pistilli, None; Maureen Maguire, None; Joan O'Brien, None
  • Footnotes
    Support  This work was supported by the National Eye Institute, Bethesda, Maryland (grant #1RO1EY023557-01) and the Department of Ophthalmology at the Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA. Funds also come from the Vision Research Core Grant (P30 EY001583), F.M. Kirby Foundation, Research to Prevent Blindness, The UPenn Hospital Board of Women Visitors, The Paul and Evanina Bell Mackall Foundation Trust, and the National Eye Institute, National Institutes of Health, Department of Health and Human Services, under eyeGENETM and contract Nos. HHSN260220700001C and HHSN263201200001C. The sponsor or funding organization had no role in the design or conduct of this research.
Investigative Ophthalmology & Visual Science July 2019, Vol.60, 1981. doi:
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      Rebecca Janet Salowe, Sayaka Merriam, Roy Lee, Marquis Vaughn, Ava Kikut, Emily Becker, Dave W Collins, Harini V Gudiseva, Qi Cui, Victoria Addis, PRITHVI SANKAR, Eydie G Miller-Ellis, Maxwell Pistilli, Maureen G Maguire, Joan M O'Brien; An Evaluation of Recruitment Methods for a Large Glaucoma Genetics Study of African Americans. Invest. Ophthalmol. Vis. Sci. 2019;60(9):1981.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : Genetic association studies often struggle to reach the enrollment targets required for statistical power, particularly when targeting minority populations. We compared the efficacy, cost, and benefits/drawbacks of recruitment methods employed by the Primary Open-Angle African American Glaucoma Genetics (POAAGG) study.

Methods : The POAAGG study enrolled 10,079 subjects between July 2010-August 2018, from University of Pennsylvania (UPenn) ophthalmology clinics, external ophthalmology clinics (academic medical centers and private practice), sampling of patients who contributed DNA to the Penn Medicine Biobank, and community outreach efforts. We calculated the enrollment yield and cost per subject for each recruitment method and evaluated trends over time.

Results : The majority of subjects were recruited from clinics at UPenn (64%) and external sites (13%) at moderate costs ($134/patient and $131/patient, respectively) (Table 1). Biobank recruitment incurred the lowest cost ($5/patient), but provided few known glaucoma cases (n=31) with limited phenotypic data. Community outreach efforts were highest in cost ($946/patient) with lower enrollment yield (n=224), but provided free glaucoma screening as benefit to the community. Personnel costs accounted for the large majority of recruitment expenses (71%). Monthly case enrollment declined as the local pool of eligible glaucoma patients was depleted, despite an increase in effort (Figure 1).

Conclusions : Meeting high recruitment goals for genetic studies is best accomplished with multiple methods. The POAAGG study enrolled the majority of subjects from UPenn ophthalmology clinics at reasonable cost. However, monthly enrollment declined over time as the pool of eligible cases grew smaller. Supplementation of this source with expansion to external sites and biobank sampling helped us to exceed enrollment goals ahead of schedule. Community outreach provided a direct benefit to participants (free glaucoma screening), but was the least cost-efficient form of recruitment. The POAAGG experience may aid other researchers in designing and budgeting recruitment efforts for large genetic studies.

This abstract was presented at the 2019 ARVO Annual Meeting, held in Vancouver, Canada, April 28 - May 2, 2019.

 

Figure 1: Monthly case enrollment declined over time, despite an increase in the number of Clinical Research Coordinators employed each month.

Figure 1: Monthly case enrollment declined over time, despite an increase in the number of Clinical Research Coordinators employed each month.

 

Table 1: Cost and Enrollment Yield for Recruitment Methods in the POAAGG Study.

Table 1: Cost and Enrollment Yield for Recruitment Methods in the POAAGG Study.

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