ID

37579

Description

INFLAMMATORY BOWEL DISEASE COLLECTION Version 1.0.1 Revised April 10th, 2017 Based mainly on the above version, additions/modifications August 2019 www.ichom.org Conditions Covered: An adult (>16) with a diagnosis of Inflammatory Bowel Disease (IBD) including Crohn’s disease, ulcerative colitis and indeterminate colitis (or IBD unclassified) Treatment Approaches: Medical | Surgical | Supportive This ODM-file contains Clinician Reported Outcome Factors. Timepoints: Baseline and Follow-up. 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. TEST StudyFor example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc. Survey used: IBD-Control PROM : IBD-Control is made available to the IBD community without license or fees, but the authors retain copyright and request that the original paper is cited in any published output. For more details, see: Bodger et al. Development and validation of a rapid, generic measure of disease control from the patient’s perspective: the IBD-control questionnaire. Gut 2014;63(7):1092-102. (Please note, only some questions of the IBD-Control questionnaire are asked, therefore a total score is not applicable or requested within this guide) ICHOM was supported for this standard set by Oxford Academic Health Science Network (partly funded by AbbVie). Kim AH, Roberts C, Feagan BG, et al. Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease — an International, Cross-disciplinary Consensus. Journal of Crohn's and Colitis. 2017;1–11. doi:10.1093/ecco-jcc/jjx161

Link

www.ichom.org

Keywords

Versions (3)
  1. 7/24/18 7/24/18 - Sarah Riepenhausen
  2. 8/8/19 8/8/19 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

August 8, 2019

DOI

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License

Creative Commons BY-NC 3.0
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ICHOM Inflammatory Bowel Disease

English

Outcome (Clinican 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
Disutility of care
Description

Disutility of care

Alias
UMLS CUI-1
C0231185
UMLS CUI-2
C0086388
UMLS CUI-3
C0021390
Please indicate whether prednisolone has been used in the last 12 months
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0281991
UMLS CUI [1,2]
C3887293
Indicate whether the patient experienced a (unexpected or expected) complication whist during IBD intervention (this can be any type of intervention) or 3 months following intervention
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0021390
UMLS CUI [1,3]
C0184661
If a complication occurred, indicate the outcome of that complication 0 = No further intervention required
Description

INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

Data type

boolean

Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2,1]
C1298908
UMLS CUI [2,2]
C1706712
If a complication occurred, indicate the outcome of that complication 1 = Surgical intervention required
Description

INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

Data type

boolean

Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C0549433
If a complication occurred, indicate the outcome of that complication 2 = Radiological intervention required
Description

INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

Data type

boolean

Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C2733119
If a complication occurred, indicate the outcome of that complication 3 = Endoscopic intervention required
Description

INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

Data type

boolean

Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2,1]
C0014245
UMLS CUI [2,2]
C0184661
If a complication occurred, indicate the outcome of that complication 4 = Medical intervention required
Description

INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

Data type

boolean

Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C0184661
Did the complication lead to prolonged hospitalization
Description

(i.e. longer than reasonably expected) INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C0745041
If the complication lead to prolonged hospitalization, indicate the total number of days the patient was hospitalized for
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

Data type

integer

Measurement units
  • days
Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2,1]
C0745041
UMLS CUI [2,2]
C3640790
days
Did the complication lead to an unplanned admission
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2,1]
C0030673
UMLS CUI [2,2]
C3854240
If the complication lead to an unplanned admission, indicate the total length of stay for all unplanned admissions due to complication within 1 year
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

Data type

integer

Measurement units
  • days
Alias
UMLS CUI [1,1]
C0184788
UMLS CUI [1,2]
C0009566
UMLS CUI [1,3]
C0021390
UMLS CUI [2,1]
C0030673
UMLS CUI [2,2]
C3854240
UMLS CUI [2,3]
C3640790
UMLS CUI [2,4]
C0439810
days
Healthcare utilization
Description

Healthcare utilization

Alias
UMLS CUI-1
C0042153
UMLS CUI-2
C0086388
How many times has the person with inflammatory bowel disease been admitted and readmitted to hospital in the last 12 months?
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical RESPONSE OPTIONS: Admissions Readmissions

Data type

integer

Measurement units
  • times
Alias
UMLS CUI [1,1]
C0600290
UMLS CUI [1,2]
C0449788
UMLS CUI [1,3]
C3887293
UMLS CUI [2,1]
C0184666
UMLS CUI [2,2]
C0449788
UMLS CUI [2,3]
C4086728
times
How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related)?
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

Data type

integer

Measurement units
  • times
Alias
UMLS CUI [1,1]
C0184666
UMLS CUI [1,2]
C0449788
UMLS CUI [1,3]
C0021390
UMLS CUI [1,4]
C3887293
times
How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months ( IBD-related) for a planned admission?
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

Data type

integer

Measurement units
  • times
Alias
UMLS CUI [1,1]
C0184666
UMLS CUI [1,2]
C1301732
UMLS CUI [1,3]
C0449788
UMLS CUI [1,4]
C0021390
UMLS CUI [1,5]
C3887293
times
How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related) for a unplanned admission?
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

Data type

integer

Measurement units
  • times
Alias
UMLS CUI [1,1]
C0184666
UMLS CUI [1,2]
C3854240
UMLS CUI [1,3]
C0449788
UMLS CUI [1,4]
C0021390
UMLS CUI [1,5]
C3887293
times
Total number of emergency room or emergency department visits realted to IBD within 1 year
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

Data type

integer

Alias
UMLS CUI [1,1]
C0449788
UMLS CUI [1,2]
C0583237
UMLS CUI [1,3]
C0021390
UMLS CUI [1,4]
C3887293
Survival and Disease Control
Description

Survival and Disease Control

Alias
UMLS CUI-1
C1148433
UMLS CUI-2
C0012634
UMLS CUI-3
C0243148
Indicate if there is evidence of anaemia?
Description

Anaemia is defined by the WHO as a haemoglobin (at sea level) of <12.0 g/dl in non-pregnant women, <11.0g/dl in pregnant women and <13.5 g/dl in men INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0002871
Is the patient clinically in remission?
Description

This could be determined using any recognised assessment or questionnaire. INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C0544452
UMLS CUI [1,2]
C0205210
UMLS CUI [1,3]
C0021390
Is the patient in biological remission?
Description

This could be determined using any approach, e.g. endoscopically, radiological, histologically INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C0544452
UMLS CUI [1,2]
C0205460
UMLS CUI [1,3]
C0021390
If the patient is in biological remission, how was this determined? 0= Endoscopically (e.g. endoscopy, colonoscopy)
Description

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

Data type

boolean

Alias
UMLS CUI [1,1]
C0544452
UMLS CUI [1,2]
C0205460
UMLS CUI [1,3]
C0021390
UMLS CUI [1,4]
C2911685
UMLS CUI [2]
C0014245
If the patient is in biological remission, how was this determined? 1= Radiologically (e.g. fluoroscopy, CT, MRI)
Description

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

Data type

boolean

Alias
UMLS CUI [1,1]
C0544452
UMLS CUI [1,2]
C0205460
UMLS CUI [1,3]
C0021390
UMLS CUI [1,4]
C2911685
UMLS CUI [2]
C0011923
If the patient is in biological remission, how was this determined? 2= Biochemistry (e.g. CRP, faecal calprotectin)
Description

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

Data type

boolean

Alias
UMLS CUI [1,1]
C0544452
UMLS CUI [1,2]
C0205460
UMLS CUI [1,3]
C0021390
UMLS CUI [1,4]
C2911685
UMLS CUI [2]
C0005477
If the patient is in biological remission, how was this determined? 3=Histologically (tissue analysis)
Description

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

Data type

boolean

Alias
UMLS CUI [1,1]
C0544452
UMLS CUI [1,2]
C0205460
UMLS CUI [1,3]
C0021390
UMLS CUI [1,4]
C2911685
UMLS CUI [2]
C0205462
Has colorectal cancer been diagnosed?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0009402
If colorectal cancer has been diagnosed, had colorectal dysplasia previously been diagnosed?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0555952
UMLS CUI [1,2]
C0334044
UMLS CUI [1,3]
C0332152
UMLS CUI [1,4]
C0009402
Patient died, regardless of cause
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0011065
Indicate the date of death
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C1148348
DD/MM/YYYY
Indicate if death was attributable to IBD
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0021390
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Similar models

Outcome (Clinican 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
Disutility of care
C0231185 (UMLS CUI-1)
C0086388 (UMLS CUI-2)
C0021390 (UMLS CUI-3)
Item
Please indicate whether prednisolone has been used in the last 12 months
integer
C0281991 (UMLS CUI [1,1])
C3887293 (UMLS CUI [1,2])
Steroid use
Code List
Please indicate whether prednisolone has been used in the last 12 months
CL Item
No use of prednisolone in the last 12 months (0)
C0032950 (UMLS CUI-1)
C3887293 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
(Comment:en)
CL Item
Use of prednisolone in the last 12 months of less than 3 months total duration (1)
C0032950 (UMLS CUI-1)
C3887293 (UMLS CUI-2)
C0449238 (UMLS CUI-3)
C1806781 (UMLS CUI-4)
(Comment:en)
CL Item
Use of prednisolone in the last 12 months for more than 3 months total duration (2)
C0032950 (UMLS CUI-1)
C3887293 (UMLS CUI-2)
C0449238 (UMLS CUI-3)
C0443252 (UMLS CUI-4)
(Comment:en)
Item
Indicate whether the patient experienced a (unexpected or expected) complication whist during IBD intervention (this can be any type of intervention) or 3 months following intervention
integer
C0009566 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
Occurrence of a complication
Code List
Indicate whether the patient experienced a (unexpected or expected) complication whist during IBD intervention (this can be any type of intervention) or 3 months following intervention
CL Item
No complication occurred (0)
C0009566 (UMLS CUI-1)
C1298908 (UMLS CUI-2)
(Comment:en)
CL Item
Yes, complication occurred (1)
C0009566 (UMLS CUI-1)
C1705108 (UMLS CUI-2)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Outcome of the complication: no further intervention
Item
If a complication occurred, indicate the outcome of that complication 0 = No further intervention required
boolean
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C1298908 (UMLS CUI [2,1])
C1706712 (UMLS CUI [2,2])
Outcome of the complication: surgical intervention
Item
If a complication occurred, indicate the outcome of that complication 1 = Surgical intervention required
boolean
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0549433 (UMLS CUI [2])
Outcome of the complication: radiological intervention
Item
If a complication occurred, indicate the outcome of that complication 2 = Radiological intervention required
boolean
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C2733119 (UMLS CUI [2])
Outcome of the complication: endoscopic intervention
Item
If a complication occurred, indicate the outcome of that complication 3 = Endoscopic intervention required
boolean
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0014245 (UMLS CUI [2,1])
C0184661 (UMLS CUI [2,2])
Outcome of the complication: medical intervention
Item
If a complication occurred, indicate the outcome of that complication 4 = Medical intervention required
boolean
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0184661 (UMLS CUI [2])
Item
Did the complication lead to prolonged hospitalization
integer
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0745041 (UMLS CUI [2])
Outcome of the complication - hospitalization
Code List
Did the complication lead to prolonged hospitalization
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Outcome of the complication - hospitalization
Item
If the complication lead to prolonged hospitalization, indicate the total number of days the patient was hospitalized for
integer
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0745041 (UMLS CUI [2,1])
C3640790 (UMLS CUI [2,2])
Item
Did the complication lead to an unplanned admission
integer
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0030673 (UMLS CUI [2,1])
C3854240 (UMLS CUI [2,2])
Outcome of the complication - hospitalization
Code List
Did the complication lead to an unplanned admission
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Outcome of the complication - unplanned admission days
Item
If the complication lead to an unplanned admission, indicate the total length of stay for all unplanned admissions due to complication within 1 year
integer
C0184788 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0030673 (UMLS CUI [2,1])
C3854240 (UMLS CUI [2,2])
C3640790 (UMLS CUI [2,3])
C0439810 (UMLS CUI [2,4])
Item Group
Healthcare utilization
C0042153 (UMLS CUI-1)
C0086388 (UMLS CUI-2)
Admissions and readmissions to hospitals
Item
How many times has the person with inflammatory bowel disease been admitted and readmitted to hospital in the last 12 months?
integer
C0600290 (UMLS CUI [1,1])
C0449788 (UMLS CUI [1,2])
C3887293 (UMLS CUI [1,3])
C0184666 (UMLS CUI [2,1])
C0449788 (UMLS CUI [2,2])
C4086728 (UMLS CUI [2,3])
All IBD-related admission to hospitals
Item
How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related)?
integer
C0184666 (UMLS CUI [1,1])
C0449788 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C3887293 (UMLS CUI [1,4])
All IBD-related planned admissions to hospitals
Item
How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months ( IBD-related) for a planned admission?
integer
C0184666 (UMLS CUI [1,1])
C1301732 (UMLS CUI [1,2])
C0449788 (UMLS CUI [1,3])
C0021390 (UMLS CUI [1,4])
C3887293 (UMLS CUI [1,5])
All IBD-related unplanned admissions to hospitals
Item
How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related) for a unplanned admission?
integer
C0184666 (UMLS CUI [1,1])
C3854240 (UMLS CUI [1,2])
C0449788 (UMLS CUI [1,3])
C0021390 (UMLS CUI [1,4])
C3887293 (UMLS CUI [1,5])
Total number of emergency room visits related to IBD
Item
Total number of emergency room or emergency department visits realted to IBD within 1 year
integer
C0449788 (UMLS CUI [1,1])
C0583237 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C3887293 (UMLS CUI [1,4])
Item Group
Survival and Disease Control
C1148433 (UMLS CUI-1)
C0012634 (UMLS CUI-2)
C0243148 (UMLS CUI-3)
Item
Indicate if there is evidence of anaemia?
integer
C0002871 (UMLS CUI [1])
Outcome of the complication - hospitalization
Code List
Indicate if there is evidence of anaemia?
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Is the patient clinically in remission?
integer
C0544452 (UMLS CUI [1,1])
C0205210 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
Outcome of the complication - hospitalization
Code List
Is the patient clinically in remission?
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Is the patient in biological remission?
integer
C0544452 (UMLS CUI [1,1])
C0205460 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
Outcome of the complication - hospitalization
Code List
Is the patient in biological remission?
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Disease activity - method of determining biological remission: Endoscopy
Item
If the patient is in biological remission, how was this determined? 0= Endoscopically (e.g. endoscopy, colonoscopy)
boolean
C0544452 (UMLS CUI [1,1])
C0205460 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C2911685 (UMLS CUI [1,4])
C0014245 (UMLS CUI [2])
Disease activity - method of determining biological remission: Radiological
Item
If the patient is in biological remission, how was this determined? 1= Radiologically (e.g. fluoroscopy, CT, MRI)
boolean
C0544452 (UMLS CUI [1,1])
C0205460 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C2911685 (UMLS CUI [1,4])
C0011923 (UMLS CUI [2])
Disease activity - method of determining biological remission: Biochemistry
Item
If the patient is in biological remission, how was this determined? 2= Biochemistry (e.g. CRP, faecal calprotectin)
boolean
C0544452 (UMLS CUI [1,1])
C0205460 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C2911685 (UMLS CUI [1,4])
C0005477 (UMLS CUI [2])
Disease activity - method of determining biological remission: Histologically
Item
If the patient is in biological remission, how was this determined? 3=Histologically (tissue analysis)
boolean
C0544452 (UMLS CUI [1,1])
C0205460 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C2911685 (UMLS CUI [1,4])
C0205462 (UMLS CUI [2])
Item
Has colorectal cancer been diagnosed?
integer
C0009402 (UMLS CUI [1])
Outcome of the complication - hospitalization
Code List
Has colorectal cancer been diagnosed?
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
If colorectal cancer has been diagnosed, had colorectal dysplasia previously been diagnosed?
integer
C0555952 (UMLS CUI [1,1])
C0334044 (UMLS CUI [1,2])
C0332152 (UMLS CUI [1,3])
C0009402 (UMLS CUI [1,4])
Outcome of the complication - hospitalization
Code List
If colorectal cancer has been diagnosed, had colorectal dysplasia previously been diagnosed?
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Patient died, regardless of cause
integer
C0011065 (UMLS CUI [1])
Outcome of the complication - hospitalization
Code List
Patient died, regardless of cause
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Date of death
Item
Indicate the date of death
date
C1148348 (UMLS CUI [1])
Item
Indicate if death was attributable to IBD
integer
C0007465 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
Outcome of the complication - hospitalization
Code List
Indicate if death was attributable to IBD
CL Item
No (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
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