ID
40643
Beschrijving
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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Versies (4)
- 23-07-18 23-07-18 - Sarah Riepenhausen
- 23-07-18 23-07-18 - Sarah Riepenhausen
- 08-08-19 08-08-19 - Sarah Riepenhausen
- 30-04-20 30-04-20 - Sarah Riepenhausen
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Creative Commons BY-NC 4.0
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ICHOM Inflammatory Bowel Disease
Demographics, Baseline Clinical Factors (Patient reported)
- StudyEvent: ODM
Beschrijving
Demographic Factors
Alias
- UMLS CUI-1
- C1704791
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Numerical (changed to "Single Answer") REFERENCE: NHS
Datatype
partialDate
Maateenheden
- YYYY
Alias
- UMLS CUI [1]
- C0001779
- UMLS CUI [2]
- C2826771
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1]
- C0079399
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1]
- C0013658
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1]
- C1519386
Beschrijving
Baseline Clinical Factors
Alias
- UMLS CUI-1
- C1442488
- UMLS CUI-2
- C0449440
- UMLS CUI-3
- C0035648
Beschrijving
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
Datatype
float
Alias
- UMLS CUI [1]
- C0005890
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single Answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0005890
- UMLS CUI [1,2]
- C1519795
Beschrijving
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
Datatype
float
Alias
- UMLS CUI [1]
- C0005910
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single Answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0005910
- UMLS CUI [1,2]
- C1519795
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C1298908
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0018799
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0020538
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0024115
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0085096
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0011849
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0022658
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0027765
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0023895
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0006826
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0011581
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0020443
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0038454
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0029408
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0004604
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0003873
Beschrijving
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 ";"
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0038013
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0566602
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0205394
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0439673
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0019163
- UMLS CUI [1,2]
- C0205156
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0019693
- UMLS CUI [1,2]
- C0205156
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0205156
- UMLS CUI [1,2]
- C0041296
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