ID
40643
Description
INFLAMMATORY BOWEL DISEASE DATA COLLECTION Version 1.0.1 Revised April 10th, 2017 Based mainly on the above version, additions/modifications August 2019 www.ichom.org Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. 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 Patient reported Forms: Demographics and Baseline Clinical Factors. Timepoints: Mainly Baseline only; Smoking and Infection Status annually, too. 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. 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 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
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Versions (4)
- 7/23/18 7/23/18 - Sarah Riepenhausen
- 7/23/18 7/23/18 - Sarah Riepenhausen
- 8/8/19 8/8/19 - Sarah Riepenhausen
- 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder
ICHOM
Uploaded on
April 30, 2020
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License
Creative Commons BY-NC 4.0
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ICHOM Inflammatory Bowel Disease
Demographics, Baseline Clinical Factors (Patient reported)
- StudyEvent: ODM
Description
Demographic Factors
Alias
- UMLS CUI-1
- C1704791
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Numerical (changed to "Single Answer") REFERENCE: NHS
Data type
partialDate
Measurement units
- YYYY
Alias
- UMLS CUI [1]
- C0001779
- UMLS CUI [2]
- C2826771
Description
The distinction between male, female, and others who do not have biological characteristics typically associated with either the male or female sex, as represented by a code INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Single Answer REFERENCE: METeOR
Data type
integer
Alias
- UMLS CUI [1]
- C0079399
Description
The level of schooling is defined in each country as per ISCED [International Standard Classification] INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Single answer REFERENCE: ISCED ISCED MAP: Red: 0 = None, 1 = Early Childhood Education Orange: 2 = Primary Education, 3 = Lower Secondary Education Blue: 4 = Upper Secondary Education, 5 = Short-Cycle Tertiary Education Black: 6 = Bachelor's or Equivalent Level, 7 = Master's or Equivalent Level, 8 = Doctoral or Equivalent Level
Data type
integer
Alias
- UMLS CUI [1]
- C0013658
Description
A person's current and past smoking behavior, as represented by a code. INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer REFERENCE: METeOR
Data type
integer
Alias
- UMLS CUI [1]
- C1519386
Description
Baseline Clinical Factors
Alias
- UMLS CUI-1
- C1442488
- UMLS CUI-2
- C0449440
- UMLS CUI-3
- C0035648
Description
The height of a person measured in centimetres Height and weight are used to calculate BMI INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of height in m or in; 999.9 = not measured REFERENCE: METeOR
Data type
float
Alias
- UMLS CUI [1]
- C0005890
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0005890
- UMLS CUI [1,2]
- C1519795
Description
The weight (body mass) of a person measured in kilograms Height and weight are used to calculate BMI INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of weight in kg or lbs; 999.9 = not collected REFERENCE: METeOR
Data type
float
Alias
- UMLS CUI [1]
- C0005910
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0005910
- UMLS CUI [1,2]
- C1519795
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C1298908
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0018799
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0020538
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0024115
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0085096
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0011849
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0022658
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0027765
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0023895
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0006826
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0011581
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0020443
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0038454
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0029408
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0004604
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0003873
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer, Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0038013
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0566602
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0205394
Description
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Data type
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0439673
Description
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0019163
- UMLS CUI [1,2]
- C0205156
Description
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0019693
- UMLS CUI [1,2]
- C0205156
Description
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0205156
- UMLS CUI [1,2]
- C0041296
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