Download PDF
Methods Inf Med 2013; 52(03): 259-265
DOI: 10.3414/ME12-01-0063
Original Articles
Schattauer GmbH

The Standardization of Uveitis Nomenclature (SUN) Project[*]

Development of a Clinical Evidence Base Utilizing Informatics Tools and Techniques
B. Trusko
1   Mount Sinai School of Medicine, Ophthalmology, New York, New York, USA
,
J. Thorne
2   The Johns Hopkins University School of Medicine, Ophthalmology, Baltimore, Maryland, USA
,
D. Jabs
1   Mount Sinai School of Medicine, Ophthalmology, New York, New York, USA
,
R. Belfort
3   Federal University of Sao Paulo, Department of Ophthalmology, Sao Paulo, Brazil
,
A. Dick
4   University of Bristol, Ophthalmology, Bristol, United Kingdom
,
S. Gangaputra
5   University of Wisconsin, Ophthalmology, Madison, Wisconsin, USA
,
R. Nussenblatt
6   The National Institutes of Health, The National Eye Institute, Bethesda, Maryland, USA
,
A. Okada
7   Kyorin Eye Center, Tokyo, Japan
,
J. Rosenbaum
8   Oregon Health and Science University, Ophthalmology and Medicine, Portland, Oregon, USA
,
for The Standardization of Uveitis Nomenclature (SUN) Project › Author Affiliations
Further Information

Publication History

received: 17 July 2012

accepted: 18 February 2012

Publication Date:
20 January 2018 (online)

    Permissions and Reprints

Summary

Background: Given the recent increased focus on evidence-based medicine, it is critical that diseases and syndromes have accurate and complete descriptions, including standardized and widely accepted terminologies. Standardizing these descriptions and terminologies is necessary to develop tools such as computerized data entry forms and classification criteria. This need is especially true for diseases that are relatively uncommon, such as uveitis.

Objectives: To develop a standardized and internationally accepted terminology for the field of uveitis.

Methods: The Standardization of Uveitis Nomenclature (SUN) Working Group (WG) is an international group of 79 uveitis experts from 18 countries and 62 clinical centers. Initial terminology was developed utilizing a “modified” green field approach, which was enhanced through web-based surveys and teleconferences via a “modified” Delphi technique. Terms were mapped provisionally into ontologic dimensions for each syndrome. The Working Group then met and utilized nominal group techniques as a formalized method of finalizing the mappings.

Results: Mapping of terms into dimensions to describe 28 major uveitic diseases was confirmed using nominal group techniques (achieving super-majority consensus) for each of the diseases at a meeting of the entire WG.

Conclusions: The SUN WG utilized an informatics-based approach to develop a stand ardized and internationally accepted terminology for the uveitides.

Keywords

Classification criteria - uveitis - Delphi technique - nominal group techniques - standardized terminology

* Supplementary material published on our website www.methods-online.com


 

  • References

  • 1 Khairaliah M. Are the standardization of the uveitis nomenclature (SUN) Working Group criteria for codifying the site inflammation appropriate for all uveitis problems? Limitations of the SUN Working Group classification. Ocul Immunol Inflamm 2010; 18 (01) 2-4.
    CrossrefPubMedGoogle Scholar
  • 2 Cimino JJ. Desiderata for controlled medical vocabularies in the twenty-first century. Methods Inf Med 1998; 37 4–5 394-403.
    Article in Thieme ConnectPubMedGoogle Scholar
  • 3 Dalkey NC. The Delphi Method: an experimental study of group opinion. Rand Corporation monograph. RM-5888-PR, June. 1969.
    Google Scholar
  • 4 Hsu C, Sandford BA. The Delphi Technique: making sense of consensus. Prac Assess, Research and Eval 2007; 12 (10) 1-8.
    PubMedGoogle Scholar
  • 5 Nussenblatt RB. The natural history of uveitis. Int Ophthalmol 1990; 14: 303-308.
    CrossrefPubMedGoogle Scholar
  • 6 Brophy S, Calin A. Ankylosing spondylitis: interaction between genes, joints, age at onset, anddisease expression. J Rheumatol 2001; 28: 2151-2154.
    PubMedGoogle Scholar
  • 7 Prieto JF, Dioz E, Gutierrez JM. et al Pars planitis: epidemiology, treatment, and association with multiple sclerosis. Ocul Immunol Inflamm 2001; 9: 93-102.
    CrossrefPubMedGoogle Scholar
  • 8 Rosenbaum JT, Holland GN. Uveitis and the tower of Babel. Arch Ophthalmol 1996; 114: 604-605.
    CrossrefPubMedGoogle Scholar
  • 9 Jabs DA, Nussenblatt RB, Rosenbaum JT. Standardization of Uveitis Nomenclature for reporting clinical data. Results of the First International Workshop. Am J Ophthalmol 2005; 140 (03) 509-516.
    CrossrefPubMedGoogle Scholar
  • 10 Rector AL. Clinical terminology: why is it so hard?. Methods Inf Med 1999; 38 4–5 239-252.
    Article in Thieme ConnectPubMedGoogle Scholar
  • 11 Raghupathi W, Umar A. Upper-level ontologies for health information systems. Towards an archetype patterns approach. Methods Inf Med 2011; 50 (03) 285-195.
    Article in Thieme ConnectPubMedGoogle Scholar
  • 12 Stanford Center for Biomedical Informatics Research, Protégé. About Protégé. Accessed November 17, 2010 from. http://protege.stanford.edu/overview/.
    PubMedGoogle Scholar
  • 13 Ruperto N, Meiorin S, Mirela S, Ravelli A, Pistorio A, Martini A. Consensus procedures and their role in pediatric rheumatology. Curr Rheumatol Rep 2008; 10 (02) 142-146.
    CrossrefPubMedGoogle Scholar
  • 14 Stanford Center for Biomedical Informatics Research, Protégé. About Protégé. Accessed November 17, 2010 from. http://protege.stanford.edu/overview/.
    PubMedGoogle Scholar
  • 15 Trusko B, Montella D, Jackson JC, Fitzhenry F, Rosenbloom ST, Brown S, Fielstein E, Elkin PL, Kotter K, Tuttle M, Iannelli RJ, Speroff T. Are post traumatic stress disorder mental health terms found in SNOMED-CT medical terminology? J Trauma Stress 2010 Nov 19. PMID: 21104745.
    PubMedGoogle Scholar