English

Outcome (Patient reported)

1 forms  
Administrative Data
Description

Administrative Data

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

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 RESPONSE OPTIONS: According to institution

Data type

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
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_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Symptoms, function and quality of life
Description

Symptoms, function and quality of life

Alias
UMLS CUI-1
C1457887
UMLS CUI-2
C0542341
UMLS CUI-3
C0034380
Do you believe your IBD has been well controlled in the past two weeks?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2911690
UMLS CUI [2,2]
C4288440
Do you believe your current treatment is useful in controlling your IBD?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2911690
UMLS CUI [2,2]
C0087111
Over the past 2 weeks, have your bowel symptoms been getting worse, getting better or not changed?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C1457887
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you miss any planned activities because of IBD? (e.g. attending school/college, going to work or a social event)
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C3174606
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you wake up at night because of symptoms of IBD?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2875252
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you suffer from significant pain or discomfort?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2737161
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you often feel lacking in energy (or fatigued) (by 'often' we mean more than half of the time)
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C0015672
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you feel anxious or depressed because of your IBD?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C0003467
UMLS CUI [2,2]
C4288440
UMLS CUI [3,1]
C0497307
UMLS CUI [3,2]
C4288440
In the past 2 weeks, did you think you needed a change to your treatment?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C1299575
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C4288440
Do you experience symptoms from any of the following fistula? 1=No fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answers, separate multiple answers with (;) (here: multiple boolean items)

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2,1]
C0016169
UMLS CUI [2,2]
C1298908
Do you experience symptoms from any of the following fistula? 2=Perianal fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2]
C0267561
Do you experience symptoms from any of the following fistula? 3=Rectovaginal fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2]
C0034895
Do you experience symptoms from any of the following fistula? 4=Enterocutaneous fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2]
C0341318
Do you experience symptoms from any of the following fistula? 5=Other fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [1,4]
C0205394
If any weight loss has occurred, was this intentional? (i.e. were you trying to lose weight?)
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1262477
UMLS CUI [1,2]
C1283828
Survival and Disease Control
Description

Survival and Disease Control

Alias
UMLS CUI-1
C1148433
UMLS CUI-2
C0012634
UMLS CUI-3
C0243148
In the last 6 months, my disease has been
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Patient reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C2707252
UMLS CUI [1,2]
C0021390
UMLS CUI [1,3]
C0747307
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Similar models

Outcome (Patient reported)

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
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Symptoms, function and quality of life
C1457887 (UMLS CUI-1)
C0542341 (UMLS CUI-2)
C0034380 (UMLS CUI-3)
Item
Do you believe your IBD has been well controlled in the past two weeks?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2911690 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
Do you believe your IBD has been well controlled in the past two weeks?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
Do you believe your current treatment is useful in controlling your IBD?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2911690 (UMLS CUI [2,1])
C0087111 (UMLS CUI [2,2])
Question 1b of the IBD-Control
Code List
Do you believe your current treatment is useful in controlling your IBD?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
CL Item
Please tick if not currently taking any treatment (3)
C0746467 (UMLS CUI-1)
C1298908 (UMLS CUI-2)
(Comment:en)
Item
Over the past 2 weeks, have your bowel symptoms been getting worse, getting better or not changed?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C1457887 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 2 of the IBD-Control
Code List
Over the past 2 weeks, have your bowel symptoms been getting worse, getting better or not changed?
CL Item
Better (0)
C0332272 (UMLS CUI-1)
(Comment:en)
CL Item
No change (1)
C0442739 (UMLS CUI-1)
(Comment:en)
CL Item
Worse (2)
C1457868 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you miss any planned activities because of IBD? (e.g. attending school/college, going to work or a social event)
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C3174606 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you miss any planned activities because of IBD? (e.g. attending school/college, going to work or a social event)
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you wake up at night because of symptoms of IBD?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2875252 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you wake up at night because of symptoms of IBD?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you suffer from significant pain or discomfort?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2737161 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you suffer from significant pain or discomfort?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you often feel lacking in energy (or fatigued) (by 'often' we mean more than half of the time)
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C0015672 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you often feel lacking in energy (or fatigued) (by 'often' we mean more than half of the time)
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you feel anxious or depressed because of your IBD?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C0003467 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
C0497307 (UMLS CUI [3,1])
C4288440 (UMLS CUI [3,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you feel anxious or depressed because of your IBD?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you think you needed a change to your treatment?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C1299575 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C4288440 (UMLS CUI [2,3])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you think you needed a change to your treatment?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Symptoms from fistula: No fistula
Item
Do you experience symptoms from any of the following fistula? 1=No fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0016169 (UMLS CUI [2,1])
C1298908 (UMLS CUI [2,2])
Symptoms from perianal fistula: perianal fistula
Item
Do you experience symptoms from any of the following fistula? 2=Perianal fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0267561 (UMLS CUI [2])
Symptoms from fistula: Rectovaginal fistula
Item
Do you experience symptoms from any of the following fistula? 3=Rectovaginal fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0034895 (UMLS CUI [2])
Symptoms from fistula: Enterocutaneous fistula
Item
Do you experience symptoms from any of the following fistula? 4=Enterocutaneous fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0341318 (UMLS CUI [2])
Symptoms from fistula: other fistula
Item
Do you experience symptoms from any of the following fistula? 5=Other fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,4])
Item
If any weight loss has occurred, was this intentional? (i.e. were you trying to lose weight?)
integer
C1262477 (UMLS CUI [1,1])
C1283828 (UMLS CUI [1,2])
Intentional weight loss
Code List
If any weight loss has occurred, was this intentional? (i.e. were you trying to lose weight?)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (2)
C1298908 (UMLS CUI-1)
(Comment:en)
Item Group
Survival and Disease Control
C1148433 (UMLS CUI-1)
C0012634 (UMLS CUI-2)
C0243148 (UMLS CUI-3)
Item
In the last 6 months, my disease has been
integer
C2707252 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0747307 (UMLS CUI [1,3])
Disease activity
Code List
In the last 6 months, my disease has been
CL Item
Constantly active giving me symptoms every day (0)
C0205177 (UMLS CUI-1)
C0332173 (UMLS CUI-2)
C1457887 (UMLS CUI-3)
(Comment:en)
CL Item
Often active, giving me symptoms most days (1)
C0332183 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C3840699 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
Sometimes active, giving me symptoms on some days (for instance 1–2 days/week) (2)
C1998882 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C3844183 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
Occasionally active, giving me symptoms 1–2 days/month; (3)
C1998882 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C3844154 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
Rarely active, giving me symptoms on a few days in the past 6 months (4)
C0522498 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C0522498 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
I was well in the past 6 months, what I consider a remission or absence of symptoms (5)
C2266644 (UMLS CUI-1)
C0544452 (UMLS CUI-2)
C0231221 (UMLS CUI-3)
(Comment:en)
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