September 2016
Volume 57, Issue 12
Open Access
ARVO Annual Meeting Abstract  |   September 2016
A Set of Ophthalmologic Logical Observation Identifiers Names and Codes (LOINC®) for Standardizing Data Collection in eyeGENE® and in Other Ocular Clinical Studies
Author Affiliations & Notes
  • Santa J Tumminia
    Office of the Director, National Eye Inst/NIH, Bethesda, Maryland, United States
  • Swapna Abhyankar
    Regenstrief Institute, Inc. , Indianapolis, Indiana, United States
  • Bryan Hendrickson
    National Library of Medicine, Bethesda, Maryland, United States
  • Robert Hufnagel
    OGVFB, National Eye Institute, Bethesda, Maryland, United States
  • Daniel Hutter
    National Library of Medicine, Bethesda, Maryland, United States
  • Clement McDonald
    National Library of Medicine, Bethesda, Maryland, United States
  • Kerry Goetz
    OGVFB, National Eye Institute, Bethesda, Maryland, United States
  • Footnotes
    Commercial Relationships   Santa Tumminia, None; Swapna Abhyankar, None; Bryan Hendrickson, None; Robert Hufnagel, None; Daniel Hutter, None; Clement McDonald, None; Kerry Goetz, None
  • Footnotes
    Support  None
Investigative Ophthalmology & Visual Science September 2016, Vol.57, 669. doi:
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      Santa J Tumminia, Swapna Abhyankar, Bryan Hendrickson, Robert Hufnagel, Daniel Hutter, Clement McDonald, Kerry Goetz; A Set of Ophthalmologic Logical Observation Identifiers Names and Codes (LOINC®) for Standardizing Data Collection in eyeGENE® and in Other Ocular Clinical Studies. Invest. Ophthalmol. Vis. Sci. 2016;57(12):669.

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

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Abstract

Purpose : eyeGENE® is a genomic research initiative created by the National Eye Institute (NEI) in response to promising discoveries in ocular genetics. eyeGENE® and the National Library of Medicine (NLM), collaborated to develop a standard set of ophthalmological test and observation concepts using Logical Observation Identifiers Names and Codes (LOINC®), an international code system for laboratory/clinical tests, measurements and observations maintained by Regenstrief Institute, Inc. Adoption of this set of standard terms allows users to capture and compare clinical research data methodically, lowering the barrier for comparative data analysis.

Methods : eyeGENE® members reviewed the phenotypic surveys used to record data from clinicians enrolling patients. eyeGENE® ocular clinical data was captured within form structures that varied according to the subject’s clinical diagnosis. Similar questions within the eyeGENE® surveys were grouped and a new ophthalmic ontology was created using LOINC® methodology, which allows for free world-wide access and adoption. Upon completion of this full ophthalmology LOINC® set, it was reviewed by LOINC® experts and physicians with ophthalmic clinical expertise.

Results : The first draft of the eyeGENE®-derived LOINC® ophthalmology data set consists of 213 concepts. Each concept includes a description of methodology and for the concepts that are not quantitative, a defined and coded answer set including machine and human readable formats. There are options for free text when other answer options are not appropriate. The answer lists also include specific “flavors of null” to help make data analysis less complicated.

Conclusions : NEI and NLM developed a set of standardized terms for recording patient tests and observations using existing eyeGENE® survey questions as the basis. Since eyeGENE® contains both genetic and phenotype data from over 6000 individuals with inherited eye disease, cross analysis will be made easier with this data standardization. The LOINC® terms are freely available at http://loinc.org. Over time, it is expected that additional terms will be added and current terms may be versioned. Adoption of standards for recording clinical encounters, such as this effort, will allow for data mining and cross comparison of data sets across a variety of studies.

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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