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ID

31147

Beschrijving

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

Trefwoorden

Versies (4)
  1. 23-07-18 23-07-18 - Sarah Riepenhausen
  2. 23-07-18 23-07-18 - Sarah Riepenhausen
  3. 08-08-19 08-08-19 - Sarah Riepenhausen
  4. 30-04-20 30-04-20 - Sarah Riepenhausen
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    ICHOM Inflammatory Bowel Disease

    Engels

    Demographics, Baseline Clinical Factors (Patient reported)

    1 Formulieren  
    Administrative Data
    Beschrijving

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722
    Indicate the patient's medical record number.
    Beschrijving

    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

    Datatype

    integer

    Alias
    UMLS CUI [1]
    C1269815
    Time Relative to Baseline (e.g. Baseline, 1 year follow-up, 2 year follow-up, ...)
    Beschrijving

    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.

    Datatype

    text

    Alias
    UMLS CUI [1,1]
    C0439564
    UMLS CUI [1,2]
    C1442488
    Demographic Factors
    Beschrijving

    Demographic Factors

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

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

    Datatype

    partialDate

    Maateenheden
    • YYYY
    Alias
    UMLS CUI [1]
    C0001779
    UMLS CUI [2]
    C2826771
    YYYY
    Please indicate your sex at birth
    Beschrijving

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

    Datatype

    integer

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

    Datatype

    integer

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

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

    Datatype

    integer

    Alias
    UMLS CUI [1]
    C1519386
    Baseline Clinical Factors
    Beschrijving

    Baseline Clinical Factors

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

    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

    Datatype

    float

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

    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

    Datatype

    float

    Alias
    UMLS CUI [1]
    C0005910
    Indicate units of weight
    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
    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
    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
    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)
    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
    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')
    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]
    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
    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]
    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)
    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]
    C0024115
    Have you been told by a doctor that you have any of the following? 5 = Diabetes (Type I or Type II)
    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]
    C0011849
    Have you been told by a doctor that you have any of the following? 6 = Kidney disease
    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]
    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)
    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]
    C0027765
    Have you been told by a doctor that you have any of the following? 8 = Liver Disease
    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]
    C0023895
    Have you been told by a doctor that you have any of the following? 9 = Cancer (within the last 5 years)
    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]
    C0006826
    Have you been told by a doctor that you have any of the following? 10 = Depression
    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]
    C0011581
    Have you been told by a doctor that you have any of the following? 11 = Problems caused by stroke
    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]
    C0038454
    Have you been told by a doctor that you have any of the following? 12=Osteoarthritis, or degenerative arthritis
    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]
    C0029408
    Have you been told by a doctor that you have any of the following? 13=Back pain
    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]
    C0004604
    Have you been told by a doctor that you have any of the following? 14=Rheumatoid arthritis
    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]
    C0003873
    Have you been told by a doctor that you have any of the following? 15=Ankylosing spondylitis
    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 [1,1]
    C0009488
    UMLS CUI [1,2]
    C0038013
    Have you been told by a doctor that you have any of the following? 16=Primary sclerosing cholangitis
    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]
    C0566602
    Have you been told by a doctor that you have any of the following? 17=High cholesterol (sometimes referred to as hyperlipidemia)
    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]
    C0020443
    Have you been previously diagnosed with or treated for Hepatitis B virus?
    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
    Have you been previously diagnosed with or treated for human immunodeficiency virus (HIV)?
    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
    Have you been previously diagnosed with or treated for tuberculosis (TB)?
    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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    Similar models

    Demographics, Baseline Clinical Factors (Patient reported)

    1 Formulieren
    Name
    Type
    Description | Question | Decode (Coded Value)
    Datatype
    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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