4.6 Article

Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration

Journal

AMERICAN JOURNAL OF OPHTHALMOLOGY
Volume 168, Issue -, Pages 1-12

Publisher

ELSEVIER SCIENCE INC
DOI: 10.1016/j.ajo.2016.04.012

Keywords

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Funding

  1. Macula Foundation USA
  2. Macular Society UK
  3. Retina Society USA
  4. Save Sight Institute, Sydney, Australia
  5. St Eric Eye Hospital, Stockholm, Sweden
  6. Wills Eye Hospital, Philadelphia, Pennsylvania, USA
  7. Retina Suisse, Switzerland
  8. Bayer (Leverkusen, Germany)
  9. Novartis (Basel, Switzerland)
  10. Allergan (Dublin, Republic Of Ireland)
  11. Roche (Basel, Switzerland)
  12. Macular Society (Andover, United Kingdom)
  13. Alcon (Fort Worth, Texas)
  14. National Institute for Health Research (UK)
  15. Alimera Sciences (Alpharetta, Georgia)
  16. Japan Society for the Promotion of Science
  17. Notal Vision (Tel Aviv, Israel)
  18. Japan Society for the Promotion of Science (Tokyo, Japan)
  19. Topcon (Tokyo, Japan)
  20. Nidek (Aichi, Japan)
  21. Canon (Tokyo, Japan)
  22. Novartis Japan (Tokyo, Japan)
  23. Santen (Osaka, Japan)
  24. Senju (Osaka, Japan)
  25. Ohtsuka (Sapporo, Japan)
  26. Wakamoto (Tokyo, Japan)
  27. Alcon Japan (Tokyo, Japan)
  28. Grants-in-Aid for Scientific Research [15H04793] Funding Source: KAKEN

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PURPOSE: To define a minimum set of outcome measures for tracking, comparing, and improving macular degeneration care. DESIGN: Recommendations from a working group of international experts in macular degeneration outcomes registry development and patient advocates, facilitated by the International Consortium for Health Outcomes Measurement (ICHOM). METHODS: Modified Delphi technique, supported by structured teleconferences, followed by online surveys to drive consensus decisions. Potential outcomes were identified through literature review of outcomes collected in existing registries and reported in major clinical trials. Outcomes were refined by the working group and selected based on impact on patients, relationship to good clinical care, and feasibility of measurement in routine clinical practice.

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