ID

40646

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 Each Clinical Visit - Clinical Form. 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 (4)
  1. 7/24/19 7/24/19 -
  2. 7/30/19 7/30/19 -
  3. 8/2/19 8/2/19 - Sarah Riepenhausen
  4. 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

Each Clinical Visit - 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
Clinical status
Description

Clinical status

Alias
UMLS CUI-1
C0449440
Indicate the type of macular degeneration
Description

INCLUSION CRITERIA: ALl patients TIMING: Baseline, Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0024437
UMLS CUI [1,2]
C0332307
Indicate the presence of geographic atrophy anywhere in the macular area that is not contiguous with the main lesion
Description

SUPPORTING DEFINITION: Geographic atrophy is defined as an area of hypopigmentation or hyperfluorescence of at least 250 μm in its minimum linear dimension with 2 of the 3 following characteristics: (i) circular shape, (ii) sharp borders, or (iii) visibility of choroidal vessels within the area of geographic atrophy INCLUSION CRITERIA: ALl patients TIMING: Baseline, Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1536085
Indicate the presence of subretinal fibrosis
Description

SUPPORTING DEFINITION: Abnormal thickening of the subretinal tissue complex (material between Bruch's membrane and outer retina) anywhere in the macular area INCLUSION CRITERIA: ALl patients TIMING: Baseline, Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0423434
Indicate the presence of pigment epithelial detachment
Description

SUPPORTING DEFINITION: Discrete elevations of the retinal pigment epithelium (RPE) anywhere in the macular area with solid (fibrovascular or haemorrhagic PED) or fluid (serous PED) matter below the corresponding retinal pigment epithelium INCLUSION CRITERIA: ALl patients TIMING: Baseline, Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0339546
Indicate the type of pigment epithelial detachment
Description

SUPPORTING DEFINITION: Solid (fibrovascular or haemorrhagic) or fluid (Serous) PED below the corresponding retinal pigment epithelium INCLUSION CRITERIA: All patients If answered '1' or '2' on Pigment epithelial detachment (PED) TIMING: Baseline, Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0339546
UMLS CUI [1,2]
C0332307
Other ocular treatments
Description

Other ocular treatments

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C0015392
Indicate if the patient received cataract surgery in the affected/study eye
Description

INCLUSION CRITERIA: ALl patients TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C2939459
Indicate the date of the cataract surgery
Description

INCLUSION CRITERIA: All patients If answered 'yes' on cataract surgery (CATSURGTX) TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2939459
DD/MM/YYYY
Indicate if the patient received YAG laser capsulotomy in the affected/study eye
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0579255
Indicate the date of the YAG laser capsulotomy
Description

INCLUSION CRITERIA: All patients If answered 'yes' on YAG laser capsulotomy (YAGLASERTX) TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0579255
DD/MM/YYYY
Indicate if the patient received retinal laser therapy in the affected/study eye
Description

SUPPORTING DEFINITION: i.e. for macular edema or diabetic retinopathy INCLUSION CRITERIA: All patients TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0438670
Indicate the date of the retinal laser therapy
Description

INCLUSION CRITERIA: All patients If answered 'yes' on retinal laser (RETLASERTX) TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0438670
DD/MM/YYYY
Indicate if the patient received vitrectomy in the affected/study eye
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0042903
Indicate the date of the vitrectomy
Description

INCLUSION CRITERIA: All patients If answered 'yes' on vitrectomy (VITRTX) TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0042903
DD/MM/YYYY
Indicate if the patient received corneal surgery in the affected/study eye
Description

SUPPORTING DEFINITION: i.e. graft, pterygium INCLUSION CRITERIA: All patients TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0197402
Indicate the date of the corneal surgery
Description

INCLUSION CRITERIA: All patients If answered 'yes' on corneal surgery (CORNSURGTX) TIMING: Each clinical visit to check for change REPORTING SOURCE: Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0197402
DD/MM/YYYY
Treatment variables
Description

Treatment variables

Alias
UMLS CUI-1
C0087111
Indicate the name of the received treatment for macular degeneration 0 = None
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0549184
UMLS CUI [1,2]
C0087111
Indicate the name of the received treatment for macular degeneration 1 = Ranibizumab (Lucentis)
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2,1]
C0013216
UMLS CUI [2,2]
C1566537
Indicate the name of the received treatment for macular degeneration 2 = Bevacizumab (Avastin)
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2,1]
C0013216
UMLS CUI [2,2]
C0796392
Indicate the name of the received treatment for macular degeneration 3 = Pegaptanib (Macugen)
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2,1]
C0013216
UMLS CUI [2,2]
C1531015
Indicate the name of the received treatment for macular degeneration 4 = Aflibercept (VEGF-trap/Eylea)
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2,1]
C0013216
UMLS CUI [2,2]
C1134659
Indicate the name of the received treatment for macular degeneration 5 = Intravitreal steroid
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2]
C1444685
Indicate the name of the received treatment for macular degeneration 6 = Photodynamic therapy
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2]
C0940918
Indicate the name of the received treatment for macular degeneration 7 = Thermal laser photocoagulation
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2]
C0441510
Indicate the name of the received treatment for macular degeneration 8 = Retinal radiation therapy
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2,1]
C0035331
UMLS CUI [2,2]
C1522449
Indicate the name of the received treatment for macular degeneration 9 = Transpupillary thermotherapy
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2,1]
C0442379
UMLS CUI [2,2]
C0879037
Indicate the name of the received treatment for macular degeneration 10 = Retinal surgical treatment
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1]
C0087111
UMLS CUI [2]
C0197770
Indicate the name of the received treatment for macular degeneration 888 = Other
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C0087111
Indicate the name of the received treatment for macular degeneration 888 = Other
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical or administrative data TYPE: Multiple answers Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0439673
UMLS CUI [1,2]
C0087111
Burden of treatment
Description

Burden of treatment

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C2828008
Burden of treatment
Description

Burden  of  treatment  is  captured  by  TREATRECEIV_NAME.

Data type

text

Alias
UMLS CUI [1,1]
C0087111
UMLS CUI [1,2]
C2828008
Complications of treatment
Description

Complications of treatment

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C0009566
Indicate if patient was diagnosed with endophthalmitis in the treated eye
Description

Severe intra-ocular inflammation within 3 months of last intra-ocular treatment, due to infectious or non-infectious causes INCLUSION CRITERIA: Neovascular macular disease patients receiving treatment TIMING: Each clinical visit REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0014236
Disease activity
Description

Disease activity

Alias
UMLS CUI-1
C0544450
Indicate the presence of fluid, edema, or hemorrhage
Description

SUPPORTING DEFINITION: Presence of intraretinal or subretinal fluid or hemorrhage that is attributable to activity of the neovascular lesion as determined by the treating ophthalmologist. This could be based on clinical examination or imaging INCLUSION CRITERIA: Neovascular macular disease patients receiving treatment TIMING: Each clinical visit REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0242420
UMLS CUI [2]
C0035317
Visual functioning and health related quality of life
Description

Visual functioning and health related quality of life

Alias
UMLS CUI-1
C4279947
UMLS CUI-2
C0042792
Indicate the patient's distance visual acuity
Description

SUPPORTING DEFINITION: Distance visual acuity (best of uncorrected, corrected using glasses or contact lenses, or pinhole) in the affected eye INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical TYPE: Numerical value RESPONSE OPTIONS: Numerical value preferably reported in LogMAR. Snellen may be used but needs to be converted to LogMAR. Please refer to page 13 for a Snellen to LogMAR conversion table. Change in distance visual acuity should be calculated from baseline and previous visual acuity assessments.

Data type

integer

Alias
UMLS CUI [1]
C0429537
Chart type used for distance visual acuity measurement
Description

SUPPORTING DEFINITION: Results preferably reported in LogMAR. Snellen may be used but needs to be converted to LogMAR. INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical TYPE: Numerical value RESPONSE OPTIONS: Numerical value preferably reported in LogMAR. Snellen may be used but needs to be converted to LogMAR. Please refer to page 13 for a Snellen to LogMAR conversion table. Change in distance visual acuity should be calculated from baseline and previous visual acuity assessments.

Data type

integer

Alias
UMLS CUI [1,1]
C1302978
UMLS CUI [1,2]
C0429537
Distance at which distance visual acuity is measured
Description

INCLUSION CRITERIA: All patients TIMING: Each clinical visit REPORTING SOURCE: Clinical TYPE: Numerical value RESPONSE OPTIONS: Record details of the distance at which visual acuity is measured

Data type

integer

Alias
UMLS CUI [1,1]
C0429537
UMLS CUI [1,2]
C0012751
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Each Clinical Visit - 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])
Item Group
Clinical status
C0449440 (UMLS CUI-1)
Item
Indicate the type of macular degeneration
integer
C0024437 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
Type of macular degeneration
Code List
Indicate the type of macular degeneration
CL Item
Neovascular age related macular degeneration (1)
C0271084 (UMLS CUI-1)
(Comment:en)
CL Item
Myopic neovascular macular degeneration (2)
C0730271 (UMLS CUI-1)
(Comment:en)
CL Item
Other neovascular macular degeneration (3)
C0024437 (UMLS CUI-1)
(Comment:en)
CL Item
Polypoidal choroidal vasculopathy (4)
C1504336 (UMLS CUI-1)
(Comment:en)
CL Item
Dry/non-neovascular age related macular degeneration (5)
C0271083 (UMLS CUI-1)
(Comment:en)
Item
Indicate the presence of geographic atrophy anywhere in the macular area that is not contiguous with the main lesion
integer
C1536085 (UMLS CUI [1])
Subretinal fibrosis
Code List
Indicate the presence of geographic atrophy anywhere in the macular area that is not contiguous with the main lesion
CL Item
Not present (0)
C0332197 (UMLS CUI-1)
(Comment:en)
CL Item
Subfoveal (present and involving the subfoveal area) (1)
C0442185 (UMLS CUI-1)
(Comment:en)
CL Item
Extra-foveal (present, but not involving the subfoveal area) (2)
C0442083 (UMLS CUI-1)
C0442185 (UMLS CUI-2)
(Comment:en)
Item
Indicate the presence of subretinal fibrosis
integer
C0423434 (UMLS CUI [1])
Subretinal fibrosis
Code List
Indicate the presence of subretinal fibrosis
CL Item
Not present (0)
C0332197 (UMLS CUI-1)
(Comment:en)
CL Item
Subfoveal (present and involving the subfoveal area) (1)
C0442185 (UMLS CUI-1)
(Comment:en)
CL Item
Extra-foveal (present, but not involving the subfoveal area) (2)
C0442083 (UMLS CUI-1)
C0442185 (UMLS CUI-2)
(Comment:en)
Item
Indicate the presence of pigment epithelial detachment
integer
C0339546 (UMLS CUI [1])
Subretinal fibrosis
Code List
Indicate the presence of pigment epithelial detachment
CL Item
Not present (0)
C0332197 (UMLS CUI-1)
(Comment:en)
CL Item
Subfoveal (present and involving the subfoveal area) (1)
C0442185 (UMLS CUI-1)
(Comment:en)
CL Item
Extra-foveal (present, but not involving the subfoveal area) (2)
C0442083 (UMLS CUI-1)
C0442185 (UMLS CUI-2)
(Comment:en)
Item
Indicate the type of pigment epithelial detachment
integer
C0339546 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
Subretinal fibrosis
Code List
Indicate the type of pigment epithelial detachment
CL Item
Solid (Fibrovascular or haemorrhagic) PED below the corresponding retinal pigment epithelium (1)
C2231426 (UMLS CUI-1)
C0154846 (UMLS CUI-2)
(Comment:en)
CL Item
Fluid (Serous) PED below the corresponding retinal pigment epithelium (2)
C2013338 (UMLS CUI-1)
(Comment:en)
Item Group
Other ocular treatments
C0087111 (UMLS CUI-1)
C0015392 (UMLS CUI-2)
Item
Indicate if the patient received cataract surgery in the affected/study eye
integer
C2939459 (UMLS CUI [1])
Cataract surgery
Code List
Indicate if the patient received cataract surgery in the affected/study eye
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Date cataract surgery
Item
Indicate the date of the cataract surgery
date
C0011008 (UMLS CUI [1,1])
C2939459 (UMLS CUI [1,2])
Item
Indicate if the patient received YAG laser capsulotomy in the affected/study eye
integer
C0579255 (UMLS CUI [1])
Cataract surgery
Code List
Indicate if the patient received YAG laser capsulotomy in the affected/study eye
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Date of YAG laser capsulotomy
Item
Indicate the date of the YAG laser capsulotomy
date
C0011008 (UMLS CUI [1,1])
C0579255 (UMLS CUI [1,2])
Item
Indicate if the patient received retinal laser therapy in the affected/study eye
integer
C0438670 (UMLS CUI [1])
Cataract surgery
Code List
Indicate if the patient received retinal laser therapy in the affected/study eye
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Date retinal laser therapy
Item
Indicate the date of the retinal laser therapy
date
C0011008 (UMLS CUI [1,1])
C0438670 (UMLS CUI [1,2])
Item
Indicate if the patient received vitrectomy in the affected/study eye
integer
C0042903 (UMLS CUI [1])
Cataract surgery
Code List
Indicate if the patient received vitrectomy in the affected/study eye
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Date vitrectomy
Item
Indicate the date of the vitrectomy
date
C0011008 (UMLS CUI [1,1])
C0042903 (UMLS CUI [1,2])
Item
Indicate if the patient received corneal surgery in the affected/study eye
integer
C0197402 (UMLS CUI [1])
Cataract surgery
Code List
Indicate if the patient received corneal surgery in the affected/study eye
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Date corneal surgery
Item
Indicate the date of the corneal surgery
date
C0011008 (UMLS CUI [1,1])
C0197402 (UMLS CUI [1,2])
Item Group
Treatment variables
C0087111 (UMLS CUI-1)
Name of treatments received: None
Item
Indicate the name of the received treatment for macular degeneration 0 = None
boolean
C0549184 (UMLS CUI [1,1])
C0087111 (UMLS CUI [1,2])
Name of treatments received: Ranibizumab
Item
Indicate the name of the received treatment for macular degeneration 1 = Ranibizumab (Lucentis)
boolean
C0087111 (UMLS CUI [1])
C0013216 (UMLS CUI [2,1])
C1566537 (UMLS CUI [2,2])
Name of treatments received: Bevacizumab
Item
Indicate the name of the received treatment for macular degeneration 2 = Bevacizumab (Avastin)
boolean
C0087111 (UMLS CUI [1])
C0013216 (UMLS CUI [2,1])
C0796392 (UMLS CUI [2,2])
Name of treatments received: Pegaptanib
Item
Indicate the name of the received treatment for macular degeneration 3 = Pegaptanib (Macugen)
boolean
C0087111 (UMLS CUI [1])
C0013216 (UMLS CUI [2,1])
C1531015 (UMLS CUI [2,2])
Name of treatments received: Aflibercept
Item
Indicate the name of the received treatment for macular degeneration 4 = Aflibercept (VEGF-trap/Eylea)
boolean
C0087111 (UMLS CUI [1])
C0013216 (UMLS CUI [2,1])
C1134659 (UMLS CUI [2,2])
Name of treatments received: Intravitreal steroid
Item
Indicate the name of the received treatment for macular degeneration 5 = Intravitreal steroid
boolean
C0087111 (UMLS CUI [1])
C1444685 (UMLS CUI [2])
Name of treatments received: Photodynamic therapy
Item
Indicate the name of the received treatment for macular degeneration 6 = Photodynamic therapy
boolean
C0087111 (UMLS CUI [1])
C0940918 (UMLS CUI [2])
Name of treatments received: Thermal laser photocoagulation
Item
Indicate the name of the received treatment for macular degeneration 7 = Thermal laser photocoagulation
boolean
C0087111 (UMLS CUI [1])
C0441510 (UMLS CUI [2])
Name of treatments received: Retinal radiation therapy
Item
Indicate the name of the received treatment for macular degeneration 8 = Retinal radiation therapy
boolean
C0087111 (UMLS CUI [1])
C0035331 (UMLS CUI [2,1])
C1522449 (UMLS CUI [2,2])
Name of treatments received: Transpupillary thermotherapy
Item
Indicate the name of the received treatment for macular degeneration 9 = Transpupillary thermotherapy
boolean
C0087111 (UMLS CUI [1])
C0442379 (UMLS CUI [2,1])
C0879037 (UMLS CUI [2,2])
Name of treatments received: Retinal surgical treatment
Item
Indicate the name of the received treatment for macular degeneration 10 = Retinal surgical treatment
boolean
C0087111 (UMLS CUI [1])
C0197770 (UMLS CUI [2])
Name of treatments received: Other
Item
Indicate the name of the received treatment for macular degeneration 888 = Other
boolean
C0205394 (UMLS CUI [1,1])
C0087111 (UMLS CUI [1,2])
Name of treatments received: Unknown/Undisclosed
Item
Indicate the name of the received treatment for macular degeneration 888 = Other
boolean
C0439673 (UMLS CUI [1,1])
C0087111 (UMLS CUI [1,2])
Item Group
Burden of treatment
C0087111 (UMLS CUI-1)
C2828008 (UMLS CUI-2)
Burden of treatment
Item
Burden of treatment
text
C0087111 (UMLS CUI [1,1])
C2828008 (UMLS CUI [1,2])
Item Group
Complications of treatment
C0087111 (UMLS CUI-1)
C0009566 (UMLS CUI-2)
Item
Indicate if patient was diagnosed with endophthalmitis in the treated eye
integer
C0014236 (UMLS CUI [1])
Endophthalmitis
Code List
Indicate if patient was diagnosed with endophthalmitis in the treated eye
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Infectious endophthalmitis – suspected or proven intra-ocular infection. This includes all cases of suspected infectious endophthalmitis, whether culture-proven (i.e. positive culture) or those with a negative culture that behave clinically like infection (i.e. responsive to antibiotic treatment) (1)
C0750491 (UMLS CUI-1)
C1532322 (UMLS CUI-2)
C0456369 (UMLS CUI-3)
C1532322 (UMLS CUI-4)
(Comment:en)
CL Item
Non-infectious endophthalmitis – not suspected to be caused by intra-ocular infection. This excludes all cases of suspected infectious endophthalmitis, whether culture-proven (i.e. positive culture) or those with a negative culture that behave clinically like infection (i.e. responsive to antibiotic treatment) (2)
C2609310 (UMLS CUI-1)
(Comment:en)
Item Group
Disease activity
C0544450 (UMLS CUI-1)
Item
Indicate the presence of fluid, edema, or hemorrhage
integer
C0242420 (UMLS CUI [1])
C0035317 (UMLS CUI [2])
Presence of fluid, edema, or hemorrhage
Code List
Indicate the presence of fluid, edema, or hemorrhage
CL Item
Active - presence of intraretinal or subretinal fluid or hemorrhage attributable to activity of the neovascular lesion (1)
C0242420 (UMLS CUI-1)
C2721564 (UMLS CUI-2)
C0035317 (UMLS CUI-3)
C0271049 (UMLS CUI-4)
(Comment:en)
CL Item
Inactive - no signs of clinically significant activity (2)
C0205254 (UMLS CUI-1)
(Comment:en)
Item Group
Visual functioning and health related quality of life
C4279947 (UMLS CUI-1)
C0042792 (UMLS CUI-2)
Distance visual acuity
Item
Indicate the patient's distance visual acuity
integer
C0429537 (UMLS CUI [1])
Item
Chart type used for distance visual acuity measurement
integer
C1302978 (UMLS CUI [1,1])
C0429537 (UMLS CUI [1,2])
Chart type
Code List
Chart type used for distance visual acuity measurement
CL Item
LogMAR (1)
C1446198 (UMLS CUI-1)
C1446199 (UMLS CUI-2)
(Comment:en)
CL Item
Snellen (2)
C0183370 (UMLS CUI-1)
(Comment:en)
Distance at which distance visual acuity is measured
Item
Distance at which distance visual acuity is measured
integer
C0429537 (UMLS CUI [1,1])
C0012751 (UMLS CUI [1,2])
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