ID

40624

Description

ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). 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.

Link

http://www.ichom.org/

Keywords

Versions (2)
  1. 7/24/19 7/24/19 -
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

DOI

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License

Creative Commons BY-NC 4.0
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ICHOM Macular Degeneration

English

Annually - Clinical Form

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Description

SUPPORTING DEFINITION: This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical TYPE: Numerical RESPONSE OPTIONS: According to institution

Data type

integer

Alias
UMLS CUI [1]
C2348585
Time relative to Baseline
Description

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Associated clinical history
Description

Associated clinical history

Alias
UMLS CUI-1
C0262926
Indicate ocular comorbidities 1 = Retinal vascular disease (presence of any retinal vascular disease such as diabetic retinopathy, retinal vein occlusion, retinal artery occlusion)
Description

SUPPORTING DEFINITION: Select all that apply INCLUSION CRITERIA: All patients TIMING: Baseline, Annually from baseline REPORTING SOURCE: Clinical TYPE: Multiple answers. Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1299003
UMLS CUI [1,3]
C0154833
UMLS CUI [2]
C0011884
UMLS CUI [3]
C0035328
UMLS CUI [4]
C0035302
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.)
Description

SUPPORTING DEFINITION: Select all that apply INCLUSION CRITERIA: All patients TIMING: Baseline, Annually from baseline REPORTING SOURCE: Clinical TYPE: Multiple answers. Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1299003
UMLS CUI [1,3]
C0730362
UMLS CUI [1,4]
C1518912
UMLS CUI [2]
C0730285
UMLS CUI [3]
C0339543
UMLS CUI [4]
C0024441
UMLS CUI [5]
C0026850
Indicate ocular comorbidities 3 = Glaucoma or other optic neuropathy (confirmed diagnosis of glaucoma or other optic neuropathy has been made)
Description

SUPPORTING DEFINITION: Select all that apply INCLUSION CRITERIA: All patients TIMING: Baseline, Annually from baseline REPORTING SOURCE: Clinical TYPE: Multiple answers. Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1299003
UMLS CUI [2]
C0017601
UMLS CUI [3,1]
C3887709
UMLS CUI [3,2]
C0205394
Indicate ocular comorbidities 4 = Amblyopia (presence of amblyopia)
Description

SUPPORTING DEFINITION: Select all that apply INCLUSION CRITERIA: All patients TIMING: Baseline, Annually from baseline REPORTING SOURCE: Clinical TYPE: Multiple answers. Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1299003
UMLS CUI [2]
C0002418
Indicate ocular comorbidities 5 = Media opacity (presence of media opacity from cataract or corneal pathology etc.)
Description

SUPPORTING DEFINITION: Select all that apply INCLUSION CRITERIA: All patients TIMING: Baseline, Annually from baseline REPORTING SOURCE: Clinical TYPE: Multiple answers. Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1299003
UMLS CUI [2]
C0086543
UMLS CUI [3]
C0010038
Indicate ocular comorbidities 888 = Other
Description

SUPPORTING DEFINITION: Select all that apply INCLUSION CRITERIA: All patients TIMING: Baseline, Annually from baseline REPORTING SOURCE: Clinical TYPE: Multiple answers. Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1299003
UMLS CUI [1,3]
C0205394
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Similar models

Annually - Clinical Form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C2348585 (UMLS CUI [1])
Time relative to Baseline
Item
Time relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Associated clinical history
C0262926 (UMLS CUI-1)
Ocular comorbidities: Retinal vascular disease
Item
Indicate ocular comorbidities 1 = Retinal vascular disease (presence of any retinal vascular disease such as diabetic retinopathy, retinal vein occlusion, retinal artery occlusion)
boolean
C0009488 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
C0154833 (UMLS CUI [1,3])
C0011884 (UMLS CUI [2])
C0035328 (UMLS CUI [3])
C0035302 (UMLS CUI [4])
Ocular comorbidities: Other macular pathology
Item
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.)
boolean
C0009488 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
C0730362 (UMLS CUI [1,3])
C1518912 (UMLS CUI [1,4])
C0730285 (UMLS CUI [2])
C0339543 (UMLS CUI [3])
C0024441 (UMLS CUI [4])
C0026850 (UMLS CUI [5])
Ocular comorbidities: Glaucoma or other optic neuropathy
Item
Indicate ocular comorbidities 3 = Glaucoma or other optic neuropathy (confirmed diagnosis of glaucoma or other optic neuropathy has been made)
boolean
C0009488 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
C0017601 (UMLS CUI [2])
C3887709 (UMLS CUI [3,1])
C0205394 (UMLS CUI [3,2])
Ocular comorbidities: Amblyopia
Item
Indicate ocular comorbidities 4 = Amblyopia (presence of amblyopia)
boolean
C0009488 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
C0002418 (UMLS CUI [2])
Ocular comorbidities: Media opacity
Item
Indicate ocular comorbidities 5 = Media opacity (presence of media opacity from cataract or corneal pathology etc.)
boolean
C0009488 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
C0086543 (UMLS CUI [2])
C0010038 (UMLS CUI [3])
Ocular comorbidities: Other
Item
Indicate ocular comorbidities 888 = Other
boolean
C0009488 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,3])
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