June 2023
Volume 64, Issue 8
Open Access
ARVO Annual Meeting Abstract  |   June 2023
An Open-access Web-based System for Inherited Retinal Disease Education
Author Affiliations & Notes
  • Edwin M Stone
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Adam P DeLuca
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Jeaneen L Andorf
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Ben P Faga
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Laurel A Faga
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Louisa M Affatigato
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Jeremy M Hoffmann
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Douglas B Critser
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Nicholas D Lessing
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Terry A Braun
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
    Biomedical Engineering, University of Iowa, Iowa City, Iowa, United States
  • Todd E Scheetz
    Institute for Vision Research, University of Iowa, Iowa City, Iowa, United States
  • Footnotes
    Commercial Relationships   Edwin Stone None; Adam DeLuca None; Jeaneen Andorf None; Ben Faga None; Laurel Faga None; Louisa Affatigato None; Jeremy Hoffmann None; Douglas Critser None; Nicholas Lessing None; Terry Braun None; Todd Scheetz None
  • Footnotes
    Support  None
Investigative Ophthalmology & Visual Science June 2023, Vol.64, 480. doi:
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    • Get Citation

      Edwin M Stone, Adam P DeLuca, Jeaneen L Andorf, Ben P Faga, Laurel A Faga, Louisa M Affatigato, Jeremy M Hoffmann, Douglas B Critser, Nicholas D Lessing, Terry A Braun, Todd E Scheetz; An Open-access Web-based System for Inherited Retinal Disease Education. Invest. Ophthalmol. Vis. Sci. 2023;64(8):480.

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

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Abstract

Purpose : To foster improved care for patients with inherited retinal disease by implementing an open-access web-based educational platform.

Methods : Patients were selected from a cohort of 3815 individuals with molecularly-confirmed inherited retinal disease seen in the retina clinic at the University of Iowa. Subjects were chosen based upon the quality of their clinical images, their length of follow-up and the degree to which they demonstrated one or more important aspects of their disease. For each patient selected for inclusion in the teaching set, best corrected visual acuities were recorded for each visit, all Goldmann visual fields were traced using a custom iPad-based tool and all patient identifying data were removed from their fundus photographs, angiograms, and OCTs.

Results : A website was established at StoneRounds.org. Three hundred and twelve patients representing 117 different disease-causing genes were posted. These patients were organized into clinical categories based upon our previously published classification system (Stone, et al., Ophthalmology 2017, PMID: 28559085). Interfaces were created to allow viewing of stereo images, downloading of images for non-profit educational purposes and automatic construction of PowerPoint presentations from selected images. Fifty-one of the 312 patients were also presented in a ”clinic simulator” format that allows a user to sequentially ask historical questions and/or see clinical images to establish a diagnosis. If a diagnosis in the simulator is incorrect, detailed contextual feedback is provided to allow the user to better understand their mistake. A feature was also created to facilitate the use of the site’s cases for videoconference-based education. The site currently contains 176,475 high resolution images from 1887 patient visits. It has been visited 35,933 times from users in 153 countries. To date the videoconference feature has been used for over 150 international educational sessions.

Conclusions : Modern genetic testing strategies have a very high false positive rate that can only be controlled by establishing a very narrow pre-test hypothesis using patient history, clinical examination, and high-quality imaging. This website provides free access to full resolution images from hundreds of patients with molecularly-confirmed rare inherited retinal disorders to assist clinicians in their pre-test diagnoses of these patients.

This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.

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