September 2016
Volume 57, Issue 12
Open Access
ARVO Annual Meeting Abstract  |   September 2016
Investigation of African Americans’ Opinions and Understanding of Glaucoma Genetics Research
Author Affiliations & Notes
  • Amanda Lehman
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Rupin Parikh
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Makayla Mccoskey
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Rebecca Salowe
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Laura O'Keefe
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Victoria Marie 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
  • Jeffrey D Henderer
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Windell Murphy
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Joan M O'Brien
    Ophthalmology, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Footnotes
    Commercial Relationships   Amanda Lehman, None; Rupin Parikh, None; Makayla Mccoskey, None; Rebecca Salowe, None; Laura O'Keefe, None; Victoria Addis, None; PRITHVI SANKAR, None; Eydie Miller-Ellis, None; Jeffrey Henderer, None; Windell Murphy, 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 F.M. Kirby Foundation, Research to Prevent Blindness, 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 September 2016, Vol.57, 813. doi:
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      Amanda Lehman, Rupin Parikh, Makayla Mccoskey, Rebecca Salowe, Laura O'Keefe, Victoria Marie Addis, PRITHVI SANKAR, Eydie G Miller-Ellis, Jeffrey D Henderer, Windell Murphy, Joan M O'Brien; Investigation of African Americans’ Opinions and Understanding of Glaucoma Genetics Research. Invest. Ophthalmol. Vis. Sci. 2016;57(12):813.

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

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Abstract

Purpose : It is currently unclear whether demographic factors or understanding of genetics research contributes to subjects’ willingness to participate in a genetics research study. This prospective study examined a subset of patients who were approached to enroll in the Primary Open-Angle African American Glaucoma Genetics (POAAGG) study and surveyed their demographic information, understanding of glaucoma and genetics, and opinion on the ethical basis of genetics research.

Methods : The POAAGG study is a 5-year study that investigates the genetic and other risk factors that underlie primary open-angle glaucoma in African Americans. Eligible participants were given a ten-question survey after choosing to enroll or not enroll in the POAAGG study. The survey included questions about demographic information (including age, gender, income, and education level), basic understanding of glaucoma and genetics, and perspectives on the ethical basis of genetics research. A subset of previously enrolled POAAGG subjects was called to answer the survey questions over the phone.

Results : A subset of patients eligible for the POAAGG study were approached and given the 10-question survey. Responses from the surveys were then compiled into an excel sheet and the differences between the two groups were analyzed. We hypothesize that a difference exists between individuals who choose to and choose not to enroll in POAAGG and that these differences may influence their participation in genetics research.

Conclusions : Identifying a difference between subjects who enrolled and did not enroll in POAAGG will help to better understand factors that influence enrollment in this study, which can be extended to other large genetic studies. The findings will also help to identify strategies to increase enrollment, such as more extensive education on genetics research or the disease being studied during subject recruitment.

This is an abstract that was submitted for the 2016 ARVO Annual Meeting, held in Seattle, Wash., May 1-5, 2016.

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