English

Baseline Condition Factors (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, 1 year follow-up, 2 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
Baseline Clinical factors
Description

Baseline Clinical factors

Alias
UMLS CUI-1
C1442488
UMLS CUI-2
C0449440
UMLS CUI-3
C0035648
WHO BMI category
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C1305855
UMLS CUI [1,2]
C0683312
Baseline Condition Factors
Description

Baseline Condition Factors

Alias
UMLS CUI-1
C1442488
UMLS CUI-2
C0021390
Indicate the diagnosis 0 = Crohn's disease
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1]
C0011900
UMLS CUI [2]
C0010346
Indicate the diagnosis 1 = Ulcerative colitis
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Single Answer

Data type

boolean

Alias
UMLS CUI [1]
C0011900
UMLS CUI [2]
C0009324
Indicate the diagnosis 2 = Indeterminate IBD or colitis unclassified
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Single Answer

Data type

boolean

Alias
UMLS CUI [1]
C0011900
UMLS CUI [2]
C0341332
UMLS CUI [3,1]
C0205426
UMLS CUI [3,2]
C0009319
Indicate the date of diagnosis
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinician reported TYPE: numerical

Data type

partialDate

Measurement units
  • MM/YYYY
Alias
UMLS CUI [1,1]
C2316983
UMLS CUI [1,2]
C0021390
MM/YYYY
Age of onset of IBD
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C0206132
UMLS CUI [1,2]
C0021390
Disease Location Tracked via Montreal Classification 0=L1 CD Localisation - terminal Ileum
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0450429
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C0341278
Disease location Tracked via Montreal Classification 1=L2 CD Localisation - colon
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0450429
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C0156147
Disease location Tracked via Montreal Classification 3=L3 CD Localisation - Ileocolon
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0450429
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C1112567
Disease Location Tracked via Montreal Classification 4=L4 CD Localisation - isolated upper disease
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0450429
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C4544979
Disease behavior Tracked via Montreal Classification 5=B1 Behaviour -­‐ Nonstricturing, nonpenetrating
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0474325
UMLS CUI [2,1]
C0333188
UMLS CUI [2,2]
C0332288
UMLS CUI [2,3]
C0205321
UMLS CUI [2,4]
C0332288
Disease Behavior Tracked via Montreal Classification 6=B2 Behaviour -­‐ Stricturing
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0474325
UMLS CUI [2]
C0333188
Disease behaviour Tracked via Montreal Classification 7=B3 Behaviour -­‐ penetrating
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0474325
UMLS CUI [2]
C0205321
Disease location Tracked via Montreal Classification 8=P - perianal disease modifier
Description

INCLUSION CRITERIA: CD only TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0450429
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C0341395
Disease Severity Tracked via Montreal Classification 0=S0 -- asymptomatic
Description

INCLUSION CRITERIA: UC + IBDU TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0521117
UMLS CUI [2]
C0231221
Disease severity Tracked via Montreal Classification 1=S1 -- Mild UC, passage of four or fewer stools/day (with or without blood), absence of any systemic illness, and normal inflammatory markers (ESR)
Description

INCLUSION CRITERIA: UC + IBDU TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0521117
UMLS CUI [2]
C0267385
Disease severity Tracked via Montreal Classification 2=S2 -- Moderate UC, passage of more than four stools per day but with minimal signs of systemic toxicity
Description

INCLUSION CRITERIA: UC + IBDU TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0521117
UMLS CUI [2]
C0267386
Disease severity Tracked via Montreal Classification 3=S3 -- Severe UC, passage of at least six bloody stools daily, pulse rate of at least 90 beats per minute, temperature of at least 37.5°C, haemoglobin or less than 10.5g/100mL, and ESR of at least 30 mm/h
Description

INCLUSION CRITERIA: UC + IBDU TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0521117
UMLS CUI [2]
C0267387
Disease extent Tracked via Montreal Classification 1=E1 Ulcerative proctitis, Involvement limited to the rectum (that is, proximal extent of inflammation is distal to the rectosigmoid junction)
Description

INCLUSION CRITERIA: UC + IBDU TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answers

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0449279
UMLS CUI [2]
C2937222
Disease extent Tracked via Montreal Classification 2=E2 -- Left--sided UC (distal UC), Involvement limited to a proportion of the colorectal distal to the splenic flexure
Description

INCLUSION CRITERIA: UC + IBDU TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0449279
UMLS CUI [2]
C2919576
Disease extent Tracked via Montreal Classification 3 = E3 -- Extensive UC (pancolitis), Involvement extends proximal to the splenic flexure
Description

INCLUSION CRITERIA: UC + IBDU TIMING: Baseline and annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0449279
UMLS CUI [2]
C2711681
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 0=None
Description

INCLUSION CRITERIA: All patients Timing: Baseline and anually REPORTING SOURCE: Clinician reported TYPE: Muliple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0549184
UMLS CUI [1,2]
C4518482
UMLS CUI [1,3]
C1280464
UMLS CUI [1,4]
C0021390
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 1=Skin
Description

INCLUSION CRITERIA: All patients Timing: Baseline and anually REPORTING SOURCE: Clinician reported TYPE: Muliple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C4518482
UMLS CUI [1,2]
C1280464
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C0037284
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 2=Joint
Description

INCLUSION CRITERIA: All patients Timing: Baseline and anually REPORTING SOURCE: Clinician reported TYPE: Muliple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C4518482
UMLS CUI [1,2]
C1280464
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C0151435
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 3=Hepatobiliary
Description

INCLUSION CRITERIA: All patients Timing: Baseline and anually REPORTING SOURCE: Clinician reported TYPE: Muliple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C4518482
UMLS CUI [1,2]
C1280464
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C0267792
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 4=Eye
Description

INCLUSION CRITERIA: All patients Timing: Baseline and anually REPORTING SOURCE: Clinician reported TYPE: Muliple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C4518482
UMLS CUI [1,2]
C1280464
UMLS CUI [1,3]
C0021390
UMLS CUI [2]
C0015397
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 5=Other
Description

INCLUSION CRITERIA: All patients Timing: Baseline and anually REPORTING SOURCE: Clinician reported TYPE: Muliple Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C4518482
UMLS CUI [1,2]
C1280464
UMLS CUI [1,3]
C0021390
UMLS CUI [1,4]
C0205394
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Similar models

Baseline Condition Factors (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, 1 year follow-up, 2 year follow-up, ...)
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Baseline Clinical factors
C1442488 (UMLS CUI-1)
C0449440 (UMLS CUI-2)
C0035648 (UMLS CUI-3)
Item
WHO BMI category
integer
C1305855 (UMLS CUI [1,1])
C0683312 (UMLS CUI [1,2])
BMI category
Code List
WHO BMI category
CL Item
underweight (1)
C0041667 (UMLS CUI-1)
(Comment:en)
CL Item
Normal (2)
C0205307 (UMLS CUI-1)
(Comment:en)
CL Item
Overweight (3)
C0497406 (UMLS CUI-1)
(Comment:en)
CL Item
Obese (4)
C0028754 (UMLS CUI-1)
(Comment:en)
CL Item
Morbidly obese (5)
C0028756 (UMLS CUI-1)
(Comment:en)
CL Item
unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item Group
Baseline Condition Factors
C1442488 (UMLS CUI-1)
C0021390 (UMLS CUI-2)
Diagnosis - Crohn's disease
Item
Indicate the diagnosis 0 = Crohn's disease
boolean
C0011900 (UMLS CUI [1])
C0010346 (UMLS CUI [2])
Diagnosis - Ulcerative colitis
Item
Indicate the diagnosis 1 = Ulcerative colitis
boolean
C0011900 (UMLS CUI [1])
C0009324 (UMLS CUI [2])
Diagnosis - indeterminate inflammatory bowel disease or colitis unclassified
Item
Indicate the diagnosis 2 = Indeterminate IBD or colitis unclassified
boolean
C0011900 (UMLS CUI [1])
C0341332 (UMLS CUI [2])
C0205426 (UMLS CUI [3,1])
C0009319 (UMLS CUI [3,2])
Date of diagnosis
Item
Indicate the date of diagnosis
partialDate
C2316983 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
Item
Age of onset of IBD
integer
C0206132 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
Age of onset
Code List
Age of onset of IBD
CL Item
Age of onset 16 years or younger (0)
C0001779 (UMLS CUI-1)
C0205653 (UMLS CUI-2)
C0008059 (UMLS CUI-3)
(Comment:en)
CL Item
Age of onset 17--40 years (1)
C0206132 (UMLS CUI-1)
C0238598 (UMLS CUI-2)
(Comment:en)
CL Item
Age of onset over 40 years (2)
C0206132 (UMLS CUI-1)
C0205847 (UMLS CUI-2)
C0001792 (UMLS CUI-3)
(Comment:en)
Disease location and behavior: L1 Terminal Ileum
Item
Disease Location Tracked via Montreal Classification 0=L1 CD Localisation - terminal Ileum
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0341278 (UMLS CUI [2])
Disease location and behavior: L2 Colon
Item
Disease location Tracked via Montreal Classification 1=L2 CD Localisation - colon
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0156147 (UMLS CUI [2])
Disease location and behavior: L3 Terminal Ileum
Item
Disease location Tracked via Montreal Classification 3=L3 CD Localisation - Ileocolon
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C1112567 (UMLS CUI [2])
Disease location and behavior: L4 upper gastrointestinal
Item
Disease Location Tracked via Montreal Classification 4=L4 CD Localisation - isolated upper disease
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C4544979 (UMLS CUI [2])
Disease location and behavior: B1 Non-Stricturing, non-penetrating
Item
Disease behavior Tracked via Montreal Classification 5=B1 Behaviour -­‐ Nonstricturing, nonpenetrating
boolean
C0008902 (UMLS CUI [1,1])
C0474325 (UMLS CUI [1,2])
C0333188 (UMLS CUI [2,1])
C0332288 (UMLS CUI [2,2])
C0205321 (UMLS CUI [2,3])
C0332288 (UMLS CUI [2,4])
Disease location and behavior: B2 Stricturing
Item
Disease Behavior Tracked via Montreal Classification 6=B2 Behaviour -­‐ Stricturing
boolean
C0008902 (UMLS CUI [1,1])
C0474325 (UMLS CUI [1,2])
C0333188 (UMLS CUI [2])
Disease location and behavior: B3 Penetrating
Item
Disease behaviour Tracked via Montreal Classification 7=B3 Behaviour -­‐ penetrating
boolean
C0008902 (UMLS CUI [1,1])
C0474325 (UMLS CUI [1,2])
C0205321 (UMLS CUI [2])
Disease location and behavior: P Perianal
Item
Disease location Tracked via Montreal Classification 8=P - perianal disease modifier
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0341395 (UMLS CUI [2])
Disease severity: S0 Remission, no symptoms
Item
Disease Severity Tracked via Montreal Classification 0=S0 -- asymptomatic
boolean
C0008902 (UMLS CUI [1,1])
C0521117 (UMLS CUI [1,2])
C0231221 (UMLS CUI [2])
Disease severity: S1 Mild UC
Item
Disease severity Tracked via Montreal Classification 1=S1 -- Mild UC, passage of four or fewer stools/day (with or without blood), absence of any systemic illness, and normal inflammatory markers (ESR)
boolean
C0008902 (UMLS CUI [1,1])
C0521117 (UMLS CUI [1,2])
C0267385 (UMLS CUI [2])
Disease severity: S2 Moderate UC
Item
Disease severity Tracked via Montreal Classification 2=S2 -- Moderate UC, passage of more than four stools per day but with minimal signs of systemic toxicity
boolean
C0008902 (UMLS CUI [1,1])
C0521117 (UMLS CUI [1,2])
C0267386 (UMLS CUI [2])
Disease severity: S3 Severe UC
Item
Disease severity Tracked via Montreal Classification 3=S3 -- Severe UC, passage of at least six bloody stools daily, pulse rate of at least 90 beats per minute, temperature of at least 37.5°C, haemoglobin or less than 10.5g/100mL, and ESR of at least 30 mm/h
boolean
C0008902 (UMLS CUI [1,1])
C0521117 (UMLS CUI [1,2])
C0267387 (UMLS CUI [2])
Disease extent: E1 Ulcerative proctitis
Item
Disease extent Tracked via Montreal Classification 1=E1 Ulcerative proctitis, Involvement limited to the rectum (that is, proximal extent of inflammation is distal to the rectosigmoid junction)
boolean
C0008902 (UMLS CUI [1,1])
C0449279 (UMLS CUI [1,2])
C2937222 (UMLS CUI [2])
Disease extent: E2 Left-Sided UC
Item
Disease extent Tracked via Montreal Classification 2=E2 -- Left--sided UC (distal UC), Involvement limited to a proportion of the colorectal distal to the splenic flexure
boolean
C0008902 (UMLS CUI [1,1])
C0449279 (UMLS CUI [1,2])
C2919576 (UMLS CUI [2])
Disease extent: E3 Extensice UC (Pancolitis)
Item
Disease extent Tracked via Montreal Classification 3 = E3 -- Extensive UC (pancolitis), Involvement extends proximal to the splenic flexure
boolean
C0008902 (UMLS CUI [1,1])
C0449279 (UMLS CUI [1,2])
C2711681 (UMLS CUI [2])
Presence of extra-intestinal manifestations: None
Item
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 0=None
boolean
C0549184 (UMLS CUI [1,1])
C4518482 (UMLS CUI [1,2])
C1280464 (UMLS CUI [1,3])
C0021390 (UMLS CUI [1,4])
Presence of extra-intestinal manifestations: Skin
Item
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 1=Skin
boolean
C4518482 (UMLS CUI [1,1])
C1280464 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0037284 (UMLS CUI [2])
Presence of extra-intestinal manifestations: Joint
Item
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 2=Joint
boolean
C4518482 (UMLS CUI [1,1])
C1280464 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0151435 (UMLS CUI [2])
Presence of extra-intestinal manifestations: Hepatobiliary
Item
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 3=Hepatobiliary
boolean
C4518482 (UMLS CUI [1,1])
C1280464 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0267792 (UMLS CUI [2])
Presence of extra-intestinal manifestations: Eye
Item
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 4=Eye
boolean
C4518482 (UMLS CUI [1,1])
C1280464 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0015397 (UMLS CUI [2])
Presence of extra-intestinal manifestations: Other
Item
Presence of extra-intestinal manifestations: Eye, skin, joint, hepatobiliary or other 5=Other
boolean
C4518482 (UMLS CUI [1,1])
C1280464 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,4])
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