ID

31191

Description

INFLAMMTORY BOWEL DISEASE DATA COLLECTION REFERENCE GUIDE Version 1.0.1 Revised April 10th, 2017 www.ichom.org ICHOM was sponsored by Oxford Academic Health Science Network for this guide, partly funded by an independent grand form AbbVie. 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 Baseline Condition factors, mainly Clinician reported (except for Diagnosis: patient reported). Timepoints: Baseline and anually, Diagnosis and Date of Diagnosis baseline only. 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)

Link

www.ichom.org

Keywords

Versions (3)
  1. 7/26/18 7/26/18 - 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

July 26, 2018

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License

Creative Commons BY-NC 3.0
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ICHOM Inflammatory Bowel Disease

English

Baseline Condition Factors (Clinican reported)

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
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
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
Baseline Condition Factors
Description

Baseline Condition Factors

Alias
UMLS CUI-1
C1442488
UMLS CUI-2
C0021390
Indicate the diagnosis
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0011900
UMLS CUI [1,2]
C0021390
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
Tracked via Montreal Classification
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
UMLS CUI [1,3]
C0008902
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]
C0341278
UMLS CUI [1,3]
C0008902
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 [1,3]
C0156147
Tracked via Montreal Classification 3=L3 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 [1,3]
C1112567
Tracked via Montreal Classification 4=L4 CD Localisation - upper gastrointestinal
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 [1,3]
C4544979
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 [1,3]
C0010346
UMLS CUI [1,4]
C0333188
UMLS CUI [1,5]
C0332288
UMLS CUI [1,6]
C0205321
UMLS CUI [1,7]
C0332288
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 [1,3]
C0010346
UMLS CUI [1,4]
C0333188
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 [1,3]
C0010346
UMLS CUI [1,4]
C0205321
Tracked via Montreal Classification 14/8=P - perianal 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 [1,3]
C0341395
Tracked via Montreal Classification 0=S0 Disease Severity -- Remission, no symptoms
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 [1,3]
C3697010
Tracked via Montreal Classification 1=S1 Disease Severity -- 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 [1,3]
C0267385
Tracked via Montreal Classification 2=S2 Disease Severity -- 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 [1,3]
C0267386
Tracked via Montreal Classification 3=S3 Disease Severity -- 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 [1,3]
C0267387
Tracked via Montreal Classification 4=UC extent -- 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 Answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0008902
UMLS CUI [1,2]
C0449279
UMLS CUI [1,3]
C2937222
Tracked via Montreal Classification 5=UC extent -- 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 [1,3]
C2919576
Tracked via Montreal Classification 6 = UC extent -- 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 [1,3]
C2711681
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
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 [1,4]
C0037284
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 [1,4]
C0151435
UMLS CUI [1,5]
C0151435
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 [1,4]
C0267792
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 [1,4]
C0015392
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)
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])
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Item Group
Baseline Condition Factors
C1442488 (UMLS CUI-1)
C0021390 (UMLS CUI-2)
Item
Indicate the diagnosis
integer
C0011900 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
Diagnosis
Code List
Indicate the diagnosis
CL Item
Crohn's disease (0)
CL Item
Ulcerative colitis (1)
CL Item
Indeterminate IBD or colitis unclassified (2)
Date of diagnosis
Item
Indicate the date of diagnosis
partialDate
C2316983 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
Item
Tracked via Montreal Classification
integer
C0206132 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0008902 (UMLS CUI [1,3])
Age of onset
Code List
Tracked via Montreal Classification
CL Item
A1 -- Age of onset 16 yr or younger (0)
CL Item
A2 -- Age of onset 17--40 yr (1)
CL Item
A3 -- Age of onset over 40 (2)
Disease location and behavior: L1 Terminal Ileum
Item
Tracked via Montreal Classification 0=L1 CD Localisation - terminal Ileum
boolean
C0450429 (UMLS CUI [1,1])
C0341278 (UMLS CUI [1,2])
C0008902 (UMLS CUI [1,3])
Disease location and behavior: L2 Colon
Item
Tracked via Montreal Classification 1=L2 CD Localisation - colon
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0156147 (UMLS CUI [1,3])
Disease location and behavior: L3 Terminal Ileum
Item
Tracked via Montreal Classification 3=L3 CD Localisation - terminal Ileum
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C1112567 (UMLS CUI [1,3])
Disease location and behavior: L4 upper gastrointestinal
Item
Tracked via Montreal Classification 4=L4 CD Localisation - upper gastrointestinal
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C4544979 (UMLS CUI [1,3])
Disease location and behavior: B1 Non-Stricturing, non-penetrating
Item
Tracked via Montreal Classification 5=B1 Behaviour -­‐ Nonstricturing, nonpenetrating
boolean
C0008902 (UMLS CUI [1,1])
C0474325 (UMLS CUI [1,2])
C0010346 (UMLS CUI [1,3])
C0333188 (UMLS CUI [1,4])
C0332288 (UMLS CUI [1,5])
C0205321 (UMLS CUI [1,6])
C0332288 (UMLS CUI [1,7])
Disease location and behavior: B2 Stricturing
Item
Tracked via Montreal Classification 6=B2 Behaviour -­‐ Stricturing
boolean
C0008902 (UMLS CUI [1,1])
C0474325 (UMLS CUI [1,2])
C0010346 (UMLS CUI [1,3])
C0333188 (UMLS CUI [1,4])
Disease location and behavior: B3 Penetrating
Item
Tracked via Montreal Classification 7=B3 Behaviour -­‐ penetrating
boolean
C0008902 (UMLS CUI [1,1])
C0474325 (UMLS CUI [1,2])
C0010346 (UMLS CUI [1,3])
C0205321 (UMLS CUI [1,4])
Disease location and behavior: P Perianal
Item
Tracked via Montreal Classification 14/8=P - perianal disease
boolean
C0450429 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0341395 (UMLS CUI [1,3])
Disease extent and severity: S0 Remission, no symptoms
Item
Tracked via Montreal Classification 0=S0 Disease Severity -- Remission, no symptoms
boolean
C0008902 (UMLS CUI [1,1])
C0521117 (UMLS CUI [1,2])
C3697010 (UMLS CUI [1,3])
Disease extent and severity: S1 Mild UC
Item
Tracked via Montreal Classification 1=S1 Disease Severity -- 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 [1,3])
Disease extent and severity: S2 Moderate UC
Item
Tracked via Montreal Classification 2=S2 Disease Severity -- 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 [1,3])
Disease extent and severity: S3 Severe UC
Item
Tracked via Montreal Classification 3=S3 Disease Severity -- 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 [1,3])
Disease extent and severity: E1 Ulcerative proctitis
Item
Tracked via Montreal Classification 4=UC extent -- 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 [1,3])
Disease extent and severity: E2 Left-Sided UC
Item
Tracked via Montreal Classification 5=UC extent -- 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 [1,3])
Disease extent and severity: E3 Extensice UC (Pancolitis)
Item
Tracked via Montreal Classification 6 = UC extent -- 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 [1,3])
Presence of extra-intestinal manifestations: None
Item
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
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 [1,4])
Presence of extra-intestinal manifestations: Joint
Item
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 [1,4])
C0151435 (UMLS CUI [1,5])
Presence of extra-intestinal manifestations: Hepatobiliary
Item
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 [1,4])
Presence of extra-intestinal manifestations: Eye
Item
Eye, skin, joint, hepatobiliary or other 4=Eye
boolean
C4518482 (UMLS CUI [1,1])
C1280464 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
C0015392 (UMLS CUI [1,4])
Presence of extra-intestinal manifestations: Other
Item
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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