ID

28778

Description

MACULAR DEGENERATION DATA COLLECTION Version 3.0.1 Revised: April 10th, 2017, International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ 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 Questionnaires used in this form: Brief IVI

Link

http://www.ichom.org/

Keywords

Versions (9)
  1. 10/16/17 10/16/17 -
  2. 10/18/17 10/18/17 -
  3. 10/20/17 10/20/17 -
  4. 11/5/17 11/5/17 -
  5. 11/5/17 11/5/17 -
  6. 11/5/17 11/5/17 -
  7. 12/4/17 12/4/17 -
  8. 2/3/18 2/3/18 -
  9. 9/17/21 9/17/21 -
Copyright Holder

ICHOM

Uploaded on

February 3, 2018

DOI

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License

Creative Commons BY-NC 3.0
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ICHOM Macular Degeneration

English

ICHOM Macular Degeneration

1 forms  
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
What is your date of birth?
Description

Age in years, calculated from birth date at commencement of therapy INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Clinical or administrative data

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0421451
DD/MM/YYYY
Please indicate your sex at birth
Description

INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Clinical or administrative data

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is your ethnicity?
Description

Note that regulations on reporting ethnicity may differ per country INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Patient-reported

Data type

integer

Alias
UMLS CUI [1]
C0015031
Do you smoke?
Description

Smoking status (of cigarettes, cigars or tobacco) INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Patient-reported

Data type

integer

Alias
UMLS CUI [1]
C1519386
Baseline Functional Status
Description

Baseline Functional Status

Alias
UMLS CUI-1
C0031809
UMLS CUI-2
C0042812
Indicate the patient's distance visual acuity
Description

Distance visual acuity (best of uncorrected, corrected using glasses or contact lenses, or pinhole) in the affected eye INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Clinical 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.

Data type

integer

Alias
UMLS CUI [1]
C0429537
Indicate the patient's distance visual acuity in the other (non study) eye
Description

Distance visual acuity (best of uncorrected, corrected using glasses or contact lenses, or pinhole) in the fellow eye INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Clinical 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.

Data type

integer

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

Results preferably reported in LogMAR. Snellen may be used but needs to be converted to LogMAR. INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Clinical

Data type

integer

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

INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Clinical RESPONSE OPTIONS: Record details of the distance at which visual acuity is measured

Data type

integer

Alias
UMLS CUI [1]
C0429537
Baseline clinical status
Description

Baseline 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]
C0024437
Indicate the presence of geographic atrophy anywhere in the macular area that is not contiguous with the main lesion
Description

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

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

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

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]
C0339546
Associated clinical history
Description

Associated clinical history

Alias
UMLS CUI-1
C0262926
Indicate ocular comorbidities
Description

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

integer

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1299003
Indicate previous macular degeneration treatment in affected eye (multiple options possible)
Description

Select all that apply INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Multiple answers Separate multiple entries with "";""

Data type

integer

Alias
UMLS CUI [1,1]
C0024437
UMLS CUI [1,2]
C0087111
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

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

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

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

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

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

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

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
Description

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

Data type

integer

Alias
UMLS CUI [1]
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

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

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 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

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 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]
C1302978
Distance at which distance visual acuity is measured
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0429537
In the past month, how much has your eyesight interfered with recognizing or meeting people?
Description

Question 1 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C1287256
In the past month, how much has your eyesight interfered with reading labels or instructions on medicines?
Description

Question 2 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C3261557
In the past month, how much has your eyesight interfered with operating household appliances and the telephone?
Description

Question 3 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C0563675
In the past month, how often has your eyesight made you go carefully to avoid falling or tripping?
Description

Question 4 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C0221188
In the past month, how much has your eyesight interfered with reading ordinary size print? (for example newspapers)
Description

Question 5 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C3174971
In the past month, how often has your eyesight made you concerned or worried about your general safety at home?
Description

Question 6 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C1736075
In the past month, how often has your eyesight made you concerned or worried about spilling or breaking things?
Description

Question 7 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C0520947
In the past month, how often has your eyesight made you concerned or worried about your general safety when out of your home?
Description

Question 8 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C1736075
In the past month, how often have you needed help from other people because of your eyesight?
Description

Question 9 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C3827573
In the past month, have you felt frustrated or annoyed because of your eyesight?
Description

Question 10 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C3260675
In the past month, have you felt lonely or isolated because of your eyesight?
Description

Question 11 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C4086303
In the past month, how often have you worried about your eyesight getting worse?
Description

Question 12 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C0558171
In the past month, how often has your eyesight made you concerned or worried about coping with everyday life?
Description

Question 13 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C0562507
In the past month, have you felt like a nuisance or a burden because of your eyesight?
Description

Question 14 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C0557911
In the past month, how much has your eyesight interfered with your life in general?
Description

Question 14 of Brief IVI - Reading and accessing information INCLUSION CRITERIA: All patients TIMING: Baseline 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042792
UMLS CUI [1,2]
C3482969
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Similar models

ICHOM Macular Degeneration

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
date of birth
Item
What is your date of birth?
date
C0421451 (UMLS CUI [1])
Item
Please indicate your sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
Code List
Please indicate your sex at birth
CL Item
Male (0)
C0086582 (UMLS CUI-1)
(Comment:en)
CL Item
Female (1)
C0015780 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
(Comment:en)
Item
What is your ethnicity?
integer
C0015031 (UMLS CUI [1])
Sex
Code List
What is your ethnicity?
CL Item
Asian  (1)
C0078988 (UMLS CUI-1)
(Comment:en)
CL Item
Black (2)
C0005680 (UMLS CUI-1)
(Comment:en)
CL Item
Hispanic  (3)
C0086409 (UMLS CUI-1)
(Comment:en)
CL Item
White (4)
C0007457 (UMLS CUI-1)
(Comment:en)
CL Item
Mixed/multiple ethnic origins  (5)
C0015031 (UMLS CUI-1)
C0205430 (UMLS CUI-2)
(Comment:en)
CL Item
Other (888)
C0205394 (UMLS CUI-1)
(Comment:en)
Item
Do you smoke?
integer
C1519386 (UMLS CUI [1])
Sex
Code List
Do you smoke?
CL Item
Current smoker (1)
C3241966 (UMLS CUI-1)
(Comment:en)
CL Item
Former smoker (2)
C0337671 (UMLS CUI-1)
(Comment:en)
CL Item
Never smoked (3)
C3472670 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown/Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item Group
Baseline Functional Status
C0031809 (UMLS CUI-1)
C0042812 (UMLS CUI-2)
Distance visual acuity
Item
Indicate the patient's distance visual acuity
integer
C0429537 (UMLS CUI [1])
Distance visual acuity
Item
Indicate the patient's distance visual acuity in the other (non study) eye
integer
C0429537 (UMLS CUI [1])
Item
Chart type used for distance visual acuity measurement
integer
C1302978 (UMLS CUI [1])
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 visual acuity
Item
Distance at which distance visual acuity is measured
integer
C0429537 (UMLS CUI [1])
Item Group
Baseline clinical status
C0449440 (UMLS CUI-1)
Item
Indicate the type of macular degeneration
integer
C0024437 (UMLS CUI [1])
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])
Type of macular degeneration
Code List
Indicate the presence of geographic atrophy anywhere in the macular area that is not contiguous with the main lesion
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)
(Comment:en)
CL Item
Not present (0)
(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)
(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)
(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)
(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)
(Comment:en)
Item
Indicate the type of pigment epithelial detachment
integer
C0339546 (UMLS CUI [1])
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)
(Comment:en)
CL Item
Fluid (Serous) PED below the corresponding retinal pigment epithelium (2)
C2013338 (UMLS CUI-1)
(Comment:en)
Item Group
Associated clinical history
C0262926 (UMLS CUI-1)
Item
Indicate ocular comorbidities
integer
C0009488 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
Ocular comorbidities
Code List
Indicate ocular comorbidities
CL Item
Retinal vascular disease (presence of any retinal vascular disease such as diabetic retinopathy, retinal vein occlusion, retinal artery occlusion) (1)
C0042373 (UMLS CUI-1)
C0035298 (UMLS CUI-2)
(Comment:en)
CL Item
Other macular pathology (presence of any other macular pathology such as , diabetic macular edema, epiretinal membrane, macular hole, macular dystrophy etc.) (2)
C0730362 (UMLS CUI-1)
(Comment:en)
CL Item
Glaucoma or other optic neuropathy (confirmed diagnosis of glaucoma or other optic neuropathy has been made) (3)
C0017601 (UMLS CUI-1)
C3887709 (UMLS CUI-2)
(Comment:en)
CL Item
Amblyopia (presence of amblyopia) (4)
C0002418 (UMLS CUI-1)
(Comment:en)
CL Item
Media opacity (presence of media opacity from cataract or corneal pathology etc.) (5)
C0086543 (UMLS CUI-1)
(Comment:en)
CL Item
Other (888)
(Comment:en)
Item
Indicate previous macular degeneration treatment in affected eye (multiple options possible)
integer
C0024437 (UMLS CUI [1,1])
C0087111 (UMLS CUI [1,2])
Ocular comorbidities
Code List
Indicate previous macular degeneration treatment in affected eye (multiple options possible)
CL Item
Previous intravitreal anti-VEGF treatment (1)
C1554888 (UMLS CUI-1)
C3895948 (UMLS CUI-2)
(Comment:en)
CL Item
Intravitreal steroid (2)
C1444685 (UMLS CUI-1)
(Comment:en)
CL Item
Photodynamic therapy (3)
C0940918 (UMLS CUI-1)
(Comment:en)
CL Item
Thermal laser photocoagulation (4)
C0441510 (UMLS CUI-1)
(Comment:en)
CL Item
Retinal radiation therapy (5)
C2095462 (UMLS CUI-1)
(Comment:en)
CL Item
Other (888)
C0205394 (UMLS CUI-1)
(Comment:en)
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Transpupillary thermotherapy (6)
C0020548 (UMLS CUI-1)
C0442379 (UMLS CUI-2)
(Comment:en)
CL Item
Retinal surgical treatment (7)
C0197770 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown/Undisclosed (999)
C0439673 (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)
CL Item
Yes (1)
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])
YAG laser capsulotomy
Code List
Indicate if the patient received YAG laser capsulotomy in the affected/study eye
CL Item
No (0)
CL Item
Yes (1)
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])
Retinal laser
Code List
Indicate if the patient received retinal laser therapy in the affected/study eye
CL Item
No (0)
CL Item
Yes (1)
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])
Vitrectomy
Code List
Indicate if the patient received vitrectomy in the affected/study eye
CL Item
No (0)
CL Item
Yes (1)
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])
Corneal surgery
Code List
Indicate if the patient received corneal surgery in the affected/study eye
CL Item
No (0)
CL Item
Yes (1)
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)
Item
Indicate the name of the received treatment for macular degeneration
integer
C0087111 (UMLS CUI [1])
Name of treatments received
Code List
Indicate the name of the received treatment for macular degeneration
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Ranibizumab (Lucentis)  (1)
C1566537 (UMLS CUI-1)
(Comment:en)
CL Item
Bevacizumab (Avastin)  (2)
C0796392 (UMLS CUI-1)
(Comment:en)
CL Item
Pegaptanib (Macugen)  (3)
C1531015 (UMLS CUI-1)
(Comment:en)
CL Item
Aflibercept (VEGF-trap/Eylea)  (4)
C1134659 (UMLS CUI-1)
(Comment:en)
CL Item
Intravitreal steroid (5)
C1444685 (UMLS CUI-1)
(Comment:en)
CL Item
Photodynamic therapy (6)
C0940918 (UMLS CUI-1)
(Comment:en)
CL Item
Thermal laser photocoagulation (7)
C0441510 (UMLS CUI-1)
(Comment:en)
CL Item
Retinal radiation therapy (8)
C2095462 (UMLS CUI-1)
(Comment:en)
CL Item
Transpupillary thermotherapy (9)
C0020548 (UMLS CUI-1)
C0442379 (UMLS CUI-2)
(Comment:en)
CL Item
Retinal surgical treatment (10)
CL Item
Other (888)
CL Item
Unknown/Undisclosed (999)
Item Group
Burden of treatment
C0087111 (UMLS CUI-1)
C2828008 (UMLS CUI-2)
treatment burden
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)
C1532322 (UMLS CUI-1)
(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)
CL Item
Inactive - no signs of clinically significant activity (2)
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])
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 visual acuity
Item
Distance at which distance visual acuity is measured
integer
C0429537 (UMLS CUI [1])
Item
In the past month, how much has your eyesight interfered with recognizing or meeting people?
integer
C0042792 (UMLS CUI [1,1])
C1287256 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how much has your eyesight interfered with recognizing or meeting people?
CL Item
Not at all (0)
CL Item
A little (1)
CL Item
A fair amount (2)
CL Item
A lot (3)
CL Item
Don't do this for other reasons (8)
Item
In the past month, how much has your eyesight interfered with reading labels or instructions on medicines?
integer
C0042792 (UMLS CUI [1,1])
C3261557 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how much has your eyesight interfered with reading labels or instructions on medicines?
CL Item
Not at all (0)
CL Item
A little (1)
CL Item
A fair amount (2)
CL Item
A lot (3)
CL Item
Don't do this for other reasons (8)
Item
In the past month, how much has your eyesight interfered with operating household appliances and the telephone?
integer
C0042792 (UMLS CUI [1,1])
C0563675 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how much has your eyesight interfered with operating household appliances and the telephone?
CL Item
Not at all (0)
CL Item
A little (1)
CL Item
A fair amount (2)
CL Item
A lot (3)
CL Item
Don't do this for other reasons (8)
Item
In the past month, how often has your eyesight made you go carefully to avoid falling or tripping?
integer
C0042792 (UMLS CUI [1,1])
C0221188 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how often has your eyesight made you go carefully to avoid falling or tripping?
CL Item
Not at all (0)
CL Item
A little (1)
CL Item
A fair amount (2)
CL Item
A lot (3)
CL Item
Don't do this for other reasons (8)
Item
In the past month, how much has your eyesight interfered with reading ordinary size print? (for example newspapers)
integer
C0042792 (UMLS CUI [1,1])
C3174971 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how much has your eyesight interfered with reading ordinary size print? (for example newspapers)
CL Item
Not at all (0)
CL Item
A fair amount (1)
CL Item
A lot (2)
CL Item
Don't do this for other reasons (8)
Item
In the past month, how often has your eyesight made you concerned or worried about your general safety at home?
integer
C0042792 (UMLS CUI [1,1])
C1736075 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how often has your eyesight made you concerned or worried about your general safety at home?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, how often has your eyesight made you concerned or worried about spilling or breaking things?
integer
C0042792 (UMLS CUI [1,1])
C0520947 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how often has your eyesight made you concerned or worried about spilling or breaking things?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, how often has your eyesight made you concerned or worried about your general safety when out of your home?
integer
C0042792 (UMLS CUI [1,1])
C1736075 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how often has your eyesight made you concerned or worried about your general safety when out of your home?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, how often have you needed help from other people because of your eyesight?
integer
C0042792 (UMLS CUI [1,1])
C3827573 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how often have you needed help from other people because of your eyesight?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, have you felt frustrated or annoyed because of your eyesight?
integer
C0042792 (UMLS CUI [1,1])
C3260675 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, have you felt frustrated or annoyed because of your eyesight?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, have you felt lonely or isolated because of your eyesight?
integer
C0042792 (UMLS CUI [1,1])
C4086303 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, have you felt lonely or isolated because of your eyesight?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, how often have you worried about your eyesight getting worse?
integer
C0042792 (UMLS CUI [1,1])
C0558171 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how often have you worried about your eyesight getting worse?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, how often has your eyesight made you concerned or worried about coping with everyday life?
integer
C0042792 (UMLS CUI [1,1])
C0562507 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how often has your eyesight made you concerned or worried about coping with everyday life?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, have you felt like a nuisance or a burden because of your eyesight?
integer
C0042792 (UMLS CUI [1,1])
C0557911 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, have you felt like a nuisance or a burden because of your eyesight?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
Item
In the past month, how much has your eyesight interfered with your life in general?
integer
C0042792 (UMLS CUI [1,1])
C3482969 (UMLS CUI [1,2])
Question 1 of Brief IVI - Reading and accessing information
Code List
In the past month, how much has your eyesight interfered with your life in general?
CL Item
Not at all (0)
CL Item
A little of the time (1)
CL Item
A fair amount of the time (2)
CL Item
A lot of the time (3)
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