ID

31147

Description

INFLAMMATORY 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, 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 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)

Link

www.ichom.org

Keywords

Versions (4)
  1. 7/23/18 7/23/18 - Sarah Riepenhausen
  2. 7/23/18 7/23/18 - Sarah Riepenhausen
  3. 8/8/19 8/8/19 - Sarah Riepenhausen
  4. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

July 23, 2018

DOI

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License

Creative Commons BY-NC 3.0
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ICHOM Inflammatory Bowel Disease

English

Demographics, Baseline Clinical Factors (Patient 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
Demographic Factors
Description

Demographic Factors

Alias
UMLS CUI-1
C1704791
In what year were you born?
Description

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

Data type

partialDate

Measurement units
  • YYYY
Alias
UMLS CUI [1]
C0001779
UMLS CUI [2]
C2826771
YYYY
Please indicate your sex at birth
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is the highest level of schooling you have completed?
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

Data type

integer

Alias
UMLS CUI [1]
C0013658
Smoking status (of cigarettes, cigars or tobacco)
Description

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

Data type

integer

Alias
UMLS CUI [1]
C1519386
Baseline Clinical Factors
Description

Baseline Clinical Factors

Alias
UMLS CUI-1
C1442488
UMLS CUI-2
C0449440
UMLS CUI-3
C0035648
Indicate the patient's height
Description

Height and weight are used to calculate BMI INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of height in cm or in

Data type

float

Alias
UMLS CUI [1]
C0005890
Indicate units of height
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
Indicate the patient's weight
Description

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

Data type

float

Alias
UMLS CUI [1]
C0005910
Indicate units of weight
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
Have you been told by a doctor or care provider that you have any of the following? Tick all that apply. 0 = The patient has no other diseases
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
Have you been told by a doctor or care provider that you have any of the following? 1 = Heart disease (For example angina, heart attack, or heart failure)
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
Have you been told by a doctor or care provider that you have any of the following? 2 = High blood pressure (sometimes referred to as 'hypertension')
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]
C0020538
Have you been told by a doctor or care provider that you have any of the following? 4 = Leg pain when walking due to poor circulation
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]
C0085096
UMLS CUI [1,2]
C0009488
Have you been told by a doctor or care provider that you have any of the following? 3 = Lung disease (For example asthma, chronic bronchitis, or emphysema)
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]
C0024115
Have you been told by a doctor that you have any of the following? 5 = Diabetes (Type I or Type II)
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]
C0011849
Have you been told by a doctor that you have any of the following? 6 = Kidney disease
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]
C0022658
Have you been told by a doctor that you have any of the following? 7 = Disease of the nervous system (For example Parkinson’s disease or Multiple Sclerosis)
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]
C0027765
Have you been told by a doctor that you have any of the following? 8 = Liver Disease
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]
C0023895
Have you been told by a doctor that you have any of the following? 9 = Cancer (within the last 5 years)
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]
C0006826
Have you been told by a doctor that you have any of the following? 10 = Depression
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]
C0011581
Have you been told by a doctor that you have any of the following? 11 = Problems caused by stroke
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]
C0038454
Have you been told by a doctor that you have any of the following? 12=Osteoarthritis, or degenerative arthritis
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]
C0029408
Have you been told by a doctor that you have any of the following? 13=Back pain
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]
C0004604
Have you been told by a doctor that you have any of the following? 14=Rheumatoid arthritis
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]
C0003873
Have you been told by a doctor that you have any of the following? 15=Ankylosing spondylitis
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 [1,1]
C0009488
UMLS CUI [1,2]
C0038013
Have you been told by a doctor that you have any of the following? 16=Primary sclerosing cholangitis
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]
C0566602
Have you been told by a doctor that you have any of the following? 17=High cholesterol (sometimes referred to as hyperlipidemia)
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]
C0020443
Have you been previously diagnosed with or treated for Hepatitis B virus?
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
Have you been previously diagnosed with or treated for human immunodeficiency virus (HIV)?
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
Have you been previously diagnosed with or treated for tuberculosis (TB)?
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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Similar models

Demographics, Baseline Clinical Factors (Patient 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
Demographic Factors
C1704791 (UMLS CUI-1)
AGE
Item
In what year were you born?
partialDate
C0001779 (UMLS CUI [1])
C2826771 (UMLS CUI [2])
Item
Please indicate your sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
Code List
Please indicate your sex at birth
CL Item
Female (1)
CL Item
Male (0)
Item
What is the highest level of schooling you have completed?
integer
C0013658 (UMLS CUI [1])
Educational level
Code List
What is the highest level of schooling you have completed?
CL Item
None (0)
CL Item
Primary (Primary education typically lasts until age 10 to 12) (1)
CL Item
Secondary (Secondary education typically lasts until age 16 to 19, e.g. High school) (2)
CL Item
Tertiary (Tertiary edcucation includes what is commonly understood as academic education but also includes advanced vocational or professional education e.g. Bachelor's or equivalent level, Master's or equivalent level, and doctoral or equivalent level, respectively) (3)
Item
Smoking status (of cigarettes, cigars or tobacco)
integer
C1519386 (UMLS CUI [1])
Smoking status
Code List
Smoking status (of cigarettes, cigars or tobacco)
CL Item
Never smoker (those who have smoked less than 100 tobacco products in their lifetime) (0)
CL Item
Ex-smoker (someone who has previously smoked daily or occasionally, but has not smoked for over 6 months) (1)
CL Item
Current smoker (someone who smokes any tobacco product either daily or occasionally) (2)
Item Group
Baseline Clinical Factors
C1442488 (UMLS CUI-1)
C0449440 (UMLS CUI-2)
C0035648 (UMLS CUI-3)
Height
Item
Indicate the patient's height
float
C0005890 (UMLS CUI [1])
Item
Indicate units of height
integer
C0005890 (UMLS CUI [1,1])
C1519795 (UMLS CUI [1,2])
Height units
Code List
Indicate units of height
CL Item
centimeters (1)
CL Item
inches (2)
Weight
Item
Indicate the patient's weight
float
C0005910 (UMLS CUI [1])
Item
Indicate units of weight
integer
C0005910 (UMLS CUI [1,1])
C1519795 (UMLS CUI [1,2])
Weight units
Code List
Indicate units of weight
CL Item
kilograms (1)
CL Item
pounds (2)
Comorbidities - No
Item
Have you been told by a doctor or care provider that you have any of the following? Tick all that apply. 0 = The patient has no other diseases
boolean
C0009488 (UMLS CUI [1,1])
C1298908 (UMLS CUI [1,2])
Comorbidities - Heart Disease
Item
Have you been told by a doctor or care provider that you have any of the following? 1 = Heart disease (For example angina, heart attack, or heart failure)
boolean
C0009488 (UMLS CUI [1,1])
C0018799 (UMLS CUI [1,2])
Comorbidities - Hypertension
Item
Have you been told by a doctor or care provider that you have any of the following? 2 = High blood pressure (sometimes referred to as 'hypertension')
boolean
C0009488 (UMLS CUI [1,1])
C0020538 (UMLS CUI [1,2])
Comorbidities - peripheral vascular disease
Item
Have you been told by a doctor or care provider that you have any of the following? 4 = Leg pain when walking due to poor circulation
boolean
C0085096 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
Comorbidities - Lung disease
Item
Have you been told by a doctor or care provider that you have any of the following? 3 = Lung disease (For example asthma, chronic bronchitis, or emphysema)
boolean
C0009488 (UMLS CUI [1,1])
C0024115 (UMLS CUI [1,2])
Comorbidities - Diabetes
Item
Have you been told by a doctor that you have any of the following? 5 = Diabetes (Type I or Type II)
boolean
C0009488 (UMLS CUI [1,1])
C0011849 (UMLS CUI [1,2])
Comorbidities - Kidney Disease
Item
Have you been told by a doctor that you have any of the following? 6 = Kidney disease
boolean
C0009488 (UMLS CUI [1,1])
C0022658 (UMLS CUI [1,2])
Comorbidities - Disease of the nervous system
Item
Have you been told by a doctor that you have any of the following? 7 = Disease of the nervous system (For example Parkinson’s disease or Multiple Sclerosis)
boolean
C0009488 (UMLS CUI [1,1])
C0027765 (UMLS CUI [1,2])
Comorbidities - Liver Disease
Item
Have you been told by a doctor that you have any of the following? 8 = Liver Disease
boolean
C0009488 (UMLS CUI [1,1])
C0023895 (UMLS CUI [1,2])
Comorbidities - Cancer
Item
Have you been told by a doctor that you have any of the following? 9 = Cancer (within the last 5 years)
boolean
C0009488 (UMLS CUI [1,1])
C0006826 (UMLS CUI [1,2])
Comorbidities - Depression
Item
Have you been told by a doctor that you have any of the following? 10 = Depression
boolean
C0009488 (UMLS CUI [1,1])
C0011581 (UMLS CUI [1,2])
Comorbidities - Stroke
Item
Have you been told by a doctor that you have any of the following? 11 = Problems caused by stroke
boolean
C0009488 (UMLS CUI [1,1])
C0038454 (UMLS CUI [1,2])
Comorbidities - Osteoarthritis
Item
Have you been told by a doctor that you have any of the following? 12=Osteoarthritis, or degenerative arthritis
boolean
C0009488 (UMLS CUI [1,1])
C0029408 (UMLS CUI [1,2])
Comorbidities - Back Pain
Item
Have you been told by a doctor that you have any of the following? 13=Back pain
boolean
C0009488 (UMLS CUI [1,1])
C0004604 (UMLS CUI [1,2])
Comorbidities - Rheumatoid arthritis
Item
Have you been told by a doctor that you have any of the following? 14=Rheumatoid arthritis
boolean
C0009488 (UMLS CUI [1,1])
C0003873 (UMLS CUI [1,2])
Comorbidities - Ankylosing spondylitis
Item
Have you been told by a doctor that you have any of the following? 15=Ankylosing spondylitis
boolean
C0009488 (UMLS CUI [1,1])
C0038013 (UMLS CUI [1,2])
Comorbidities - Primary Sclerosing Cholangitis
Item
Have you been told by a doctor that you have any of the following? 16=Primary sclerosing cholangitis
boolean
C0009488 (UMLS CUI [1,1])
C0566602 (UMLS CUI [1,2])
Comorbidities - High Cholesterol
Item
Have you been told by a doctor that you have any of the following? 17=High cholesterol (sometimes referred to as hyperlipidemia)
boolean
C0009488 (UMLS CUI [1,1])
C0020443 (UMLS CUI [1,2])
Item
Have you been previously diagnosed with or treated for Hepatitis B virus?
integer
C0019163 (UMLS CUI [1,1])
C0205156 (UMLS CUI [1,2])
Previous HBV infection
Code List
Have you been previously diagnosed with or treated for Hepatitis B virus?
CL Item
No (0)
CL Item
Yes (1)
Item
Have you been previously diagnosed with or treated for human immunodeficiency virus (HIV)?
integer
C0019693 (UMLS CUI [1,1])
C0205156 (UMLS CUI [1,2])
Previous HBV infection
Code List
Have you been previously diagnosed with or treated for human immunodeficiency virus (HIV)?
CL Item
No (0)
CL Item
Yes (1)
Item
Have you been previously diagnosed with or treated for tuberculosis (TB)?
integer
C0205156 (UMLS CUI [1,1])
C0041296 (UMLS CUI [1,2])
Previous HBV infection
Code List
Have you been previously diagnosed with or treated for tuberculosis (TB)?
CL Item
No (0)
CL Item
Yes (1)
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