ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement ( The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Macular Degeneration, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Neovascular Macular Degeneration Neovascular Age Related Macular Degeneration | Polypoidal Choroidal Vasculopathy | Myopic Neovascular Macular Degeneration | Other Forms of Neovascular Macular Degeneration (includes Post-Traumatic, Inflammatory, Idiopathic, Macular Telangiectasia Type 2) Non-Neovascular Age Related Macular Degeneration Treatment approaches: Intravitreal anti-VEGF treatment | Other intravitreal treatment | Photodynamic therapy | Thermal laser photocoagulation | Retinal radiation therapy | Transpupillary thermotherapy | Retinal surgical treatment This document contains the Annually - Clinical Form. It has to be filled in annually from baseline. Collecting Patient-Reported Outcome Measure: Brief Impact of Vision Impairment Questionnaire (Brief IVI): The Brief IVI includes costs for commercial use, and requires an agreement license. Therefore this questionnaire is not included in this Version of the standard set. Reference: Rodrigues IA, Sprinkhuizen SM, Barthelmes D, et al. Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration. American Journal of Opthalmology. 2016;168:1–12. doi: 10.1016/j.ajo.2016.04.012 The Standard set of ICHOM was supported by the WillsEye Hospital (America’s First World’s Best), Retina Suisse, St. Erik Eye Hospital, Macular Society, The Retina Society, Save sight Institute and The Macula Foundation (Preserving and Restoring Vision). For this version of the standard set, semantic annotation with UMLS CUIs has been added.


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  1. 7/24/19
  2. 4/30/20
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ICHOM Macular Degeneration

Annually - Clinical Form

  1. StudyEvent: ODM
    1. Annually - Clinical Form
Administrative Data
Associated clinical history
Indicate ocular comorbidities 1 = Retinal vascular disease (presence of any retinal vascular disease such as diabetic retinopathy, retinal vein occlusion, retinal artery occlusion)
Indicate ocular comorbidities 2 = Other macular pathology (presence of any other macular pathology such as , diabetic macular edema, epiretinal membrane, macular hole, macular dystrophy etc.)
Indicate ocular comorbidities 3 = Glaucoma or other optic neuropathy (confirmed diagnosis of glaucoma or other optic neuropathy has been made)
Indicate ocular comorbidities 4 = Amblyopia (presence of amblyopia)
Indicate ocular comorbidities 5 = Media opacity (presence of media opacity from cataract or corneal pathology etc.)
Indicate ocular comorbidities 888 = Other