ID
40643
Descripción
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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Versiones (4)
- 23/7/18 23/7/18 - Sarah Riepenhausen
- 23/7/18 23/7/18 - Sarah Riepenhausen
- 8/8/19 8/8/19 - Sarah Riepenhausen
- 30/4/20 30/4/20 - Sarah Riepenhausen
Titular de derechos de autor
ICHOM
Subido en
30 de abril de 2020
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Licencia
Creative Commons BY-NC 4.0
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ICHOM Inflammatory Bowel Disease
Demographics, Baseline Clinical Factors (Patient reported)
- StudyEvent: ODM
Descripción
Demographic Factors
Alias
- UMLS CUI-1
- C1704791 (Demographics Domain)
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Numerical (changed to "Single Answer") REFERENCE: NHS
Tipo de datos
partialDate
Unidades de medida
- YYYY
Alias
- UMLS CUI [1]
- C0001779 (Age)
- SNOMED
- 424144002
- LOINC
- LP28815-6
- UMLS CUI [2]
- C2826771 (Birth Year)
Descripción
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
Tipo de datos
integer
Alias
- UMLS CUI [1]
- C0079399 (Gender)
- SNOMED
- 263495000
- LOINC
- LP61312-2
Descripción
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
Tipo de datos
integer
Alias
- UMLS CUI [1]
- C0013658 (Educational Status)
- SNOMED
- 266981003
Descripción
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
Tipo de datos
integer
Alias
- UMLS CUI [1]
- C1519386 (Smoking Status)
Descripción
Baseline Clinical Factors
Alias
- UMLS CUI-1
- C1442488 (Baseline)
- LOINC
- LA16758-7
- UMLS CUI-2
- C0449440 (Clinical status)
- SNOMED
- 263493007
- UMLS CUI-3
- C0035648 (risk factors)
- SNOMED
- 80943009
Descripción
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
Tipo de datos
float
Alias
- UMLS CUI [1]
- C0005890 (Body Height)
- SNOMED
- 50373000
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single Answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0005890 (Body Height)
- SNOMED
- 50373000
- UMLS CUI [1,2]
- C1519795 (Unit of Measure)
- SNOMED
- 767524001
Descripción
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
Tipo de datos
float
Alias
- UMLS CUI [1]
- C0005910 (Body Weight)
- SNOMED
- 27113001
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single Answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0005910 (Body Weight)
- SNOMED
- 27113001
- UMLS CUI [1,2]
- C1519795 (Unit of Measure)
- SNOMED
- 767524001
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1,1]
- C0009488 (Comorbidity)
- UMLS CUI [1,2]
- C1298908 (no)
- SNOMED
- 373067005
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1,1]
- C0009488 (Comorbidity)
- UMLS CUI [1,2]
- C0018799 (Heart Diseases)
- SNOMED
- 56265001
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0020538 (Hypertensive disease)
- SNOMED
- 38341003
- LOINC
- MTHU020789
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0024115 (Lung diseases)
- SNOMED
- 19829001
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0085096 (Peripheral Vascular Diseases)
- SNOMED
- 400047006
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0011849 (Diabetes Mellitus)
- SNOMED
- 73211009
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0022658 (Kidney Diseases)
- SNOMED
- 90708001
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0027765 (nervous system disorder)
- SNOMED
- 118940003
- LOINC
- LA10590-0
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0023895 (Liver diseases)
- SNOMED
- 235856003
- LOINC
- LA17774-3
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0006826 (Malignant Neoplasms)
- SNOMED
- 363346000
- LOINC
- LP100805-3
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0011581 (Depressive disorder)
- SNOMED
- 35489007
- LOINC
- LA10576-9
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0020443 (Hypercholesterolemia)
- SNOMED
- 13644009
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0038454 (Cerebrovascular accident)
- SNOMED
- 230690007
- LOINC
- MTHU020801
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0029408 (Degenerative polyarthritis)
- SNOMED
- 396275006
- LOINC
- LA17768-5
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0004604 (Back Pain)
- SNOMED
- 161891005
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0003873 (Rheumatoid Arthritis)
- SNOMED
- 69896004
- LOINC
- LA15161-5
Descripción
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 ";"
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0038013 (Ankylosing spondylitis)
- SNOMED
- 9631008
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488 (Comorbidity)
- UMLS CUI [2]
- C0566602 (Primary sclerosing cholangitis)
- SNOMED
- 197441003
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1,1]
- C0009488 (Comorbidity)
- UMLS CUI [1,2]
- C0205394 (Other)
- SNOMED
- 74964007
- LOINC
- LP21049-9
Descripción
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer
Tipo de datos
boolean
Alias
- UMLS CUI [1,1]
- C0009488 (Comorbidity)
- UMLS CUI [1,2]
- C0439673 (Unknown)
- SNOMED
- 261665006
- LOINC
- LA4489-6
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0019163 (Hepatitis B)
- SNOMED
- 66071002
- LOINC
- LA18126-5
- UMLS CUI [1,2]
- C0205156 (Previous)
- SNOMED
- 9130008
- LOINC
- LP21061-4
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0019693 (HIV Infections)
- SNOMED
- 86406008
- UMLS CUI [1,2]
- C0205156 (Previous)
- SNOMED
- 9130008
- LOINC
- LP21061-4
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient reported TYPE: Single Answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0205156 (Previous)
- SNOMED
- 9130008
- LOINC
- LP21061-4
- UMLS CUI [1,2]
- C0041296 (Tuberculosis)
- SNOMED
- 373576009
- LOINC
- LP28599-6
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- StudyEvent: ODM
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