ID

37577

Descripción

INFLAMMATORY BOWEL DISEASE COLLECTION Version 1.0.1 Revised April 10th, 2017 Based mainly on the above version, additions/modifications August 2019 www.ichom.org 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 Clinician Reported Treatment Factors. Timepoints: Baseline and Follow-up or annually. 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. TEST StudyFor 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

Link

www.ichom.org

Palabras clave

Versiones (3)
  1. 27/7/18 27/7/18 - Sarah Riepenhausen
  2. 8/8/19 8/8/19 - Sarah Riepenhausen
  3. 30/4/20 30/4/20 - Sarah Riepenhausen
Titular de derechos de autor

ICHOM

Subido en

8 de agosto de 2019

DOI

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Licencia

Creative Commons BY-NC 3.0
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ICHOM Inflammatory Bowel Disease

Inglés

Treatment Factors (Clinican reported)

1 formularios  
Administrative Data
Descripción

Administrative Data

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

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

Tipo de datos

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
Descripción

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.

Tipo de datos

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Treatment Factors
Descripción

Treatment Factors

Alias
UMLS CUI-1
C0679853
Indicate if the patient has had any IBD-related surgeries 0=No IBD-related surgery
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0549184
UMLS CUI [1,2]
C0543467
UMLS CUI [1,3]
C0021390
Indicate if the patient has had any IBD-related surgeries 1=Small bowel resection
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [2]
C0192601
Indicate if the patient has had any IBD-related surgeries 2=Strictureplasty
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [2]
C3665868
Indicate if the patient has had any IBD-related surgeries 3=Segmental colectomy (with or without stoma)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [2]
C0149750
Indicate if the patient has had any IBD-related surgeries 4=Total colectomy and ileostomy (this operation usually is for acute UC)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [2]
C0192871
Indicate if the patient has had any IBD-related surgeries 5=Creation of ileorectal anastomosis
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [2]
C0192754
Indicate if the patient has had any IBD-related surgeries 6=Total proctocolectomy and ileostomy
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [2]
C0843044
Indicate if the patient has had any IBD-related surgeries 7=Ileocecal resection
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [2]
C2409568
Indicate if the patient has had any IBD-related surgeries 888=other
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and Annually REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0021390
UMLS CUI [1,3]
C0205394
If the patient has received IBD-related surgery indicate the method of surgical procedure 0 = single-port laparoscopic surgery
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answers, separate multiple answers with (;) (here: multiple boolean items)

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0543467
UMLS CUI [1,3]
C0332307
UMLS CUI [2,1]
C0751429
UMLS CUI [2,2]
C4087354
If the patient has received IBD-related surgery indicate the method of surgical procedure 1 = multiport laparoscopic surgery
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Text

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0543467
UMLS CUI [1,3]
C0332307
UMLS CUI [2,1]
C0751429
UMLS CUI [2,2]
C3880635
If the patient has received IBD-related surgery indicate the method of surgical procedure 2 = conventional open surgery
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Text

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0543467
UMLS CUI [1,3]
C0332307
UMLS CUI [2,1]
C0543467
UMLS CUI [2,2]
C0348025
Please indicate the date of surgery
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Numerical

Tipo de datos

date

Unidades de medida
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1624150
DD/MM/YYYY
Indicate whether the patient currently has a stoma in situ at this point in time
Descripción

INCLUSION CRITERIA: All patients who have had colectomy surgery TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Single Answer

Tipo de datos

integer

Alias
UMLS CUI [1,1]
C1955856
UMLS CUI [1,2]
C0521116
What type of medication for IBD does the patient currently take (regardless of when started)? 0=no IBD medication currently taken
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [1,3]
C1298908
What type of medication for IBD does the patient currently take (regardless of when started)? 1=Steroids
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [2]
C0038317
What type of medication for IBD does the patient currently take (regardless of when started)? 2=biologics – Anti-TNF Agents ( e.g. Adalimumab, Certolizumab pegol, Golimumab, Infliximab, Infliximab-dyyb)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [2]
C0281481
What type of medication for IBD does the patient currently take (regardless of when started)? 3=biologics - Integrin receptor antagonists (e.g. Natalizumab, Vedolizumab)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [2]
C2917367
What type of medication for IBD does the patient currently take (regardless of when started)? 4=biologics - interleukin-antagonists (e.g. ustekinumab)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [2]
C3653320
What type of medication for IBD does the patient currently take (regardless of when started)? 5=mesalamine (or mesalazine)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [2]
C0127615
What type of medication for IBD does the patient currently take (regardless of when started)? 6=thiopurines (e.g. azathioprine, 6-mercaptopurine) or methotrexate
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [2]
C0597573
UMLS CUI [3]
C0025677
What type of medication for IBD does the patient currently take (regardless of when started)? 7=other immunomodulators (e.g. mycophenylate, cyclosporine, tacrolimus)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [2,1]
C1527392
UMLS CUI [2,2]
C0205394
What type of medication for IBD does the patient currently take (regardless of when started)? 888=others (including probiotics, cellular therapy, nutritional, symptom control)
Descripción

INCLUSION CRITERIA: All patients TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: Multiple Answer

Tipo de datos

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0746467
UMLS CUI [1,3]
C0205394
Was the patient in a colorectal cancer surveillance programme prior to their diagnosis of colorectal cancer?
Descripción

INCLUSION CRITERIA: All patients who have been diagnosed with colorectal cancer TIMING: Baseline and follow-up REPORTING SOURCE: Clinician reported TYPE: SIngle Answer

Tipo de datos

integer

Alias
UMLS CUI [1]
C4316665
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Similar models

Treatment Factors (Clinican reported)

1 formularios
Name
Tipo
Description | Question | Decode (Coded Value)
Tipo de datos
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, 6 months follow-up, 1 year follow-up, ...)
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Treatment Factors
C0679853 (UMLS CUI-1)
IBD-related surgeries: None
Item
Indicate if the patient has had any IBD-related surgeries 0=No IBD-related surgery
boolean
C0549184 (UMLS CUI [1,1])
C0543467 (UMLS CUI [1,2])
C0021390 (UMLS CUI [1,3])
IBD-related surgeries: Small Bowel Resection
Item
Indicate if the patient has had any IBD-related surgeries 1=Small bowel resection
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0192601 (UMLS CUI [2])
IBD-related surgeries: Strictureplasty
Item
Indicate if the patient has had any IBD-related surgeries 2=Strictureplasty
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C3665868 (UMLS CUI [2])
IBD-related surgeries: Segmental colectomy
Item
Indicate if the patient has had any IBD-related surgeries 3=Segmental colectomy (with or without stoma)
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0149750 (UMLS CUI [2])
IBD-related surgeries: Total Colectomy
Item
Indicate if the patient has had any IBD-related surgeries 4=Total colectomy and ileostomy (this operation usually is for acute UC)
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0192871 (UMLS CUI [2])
IBD-related surgeries: Ileorectal anastomosis
Item
Indicate if the patient has had any IBD-related surgeries 5=Creation of ileorectal anastomosis
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0192754 (UMLS CUI [2])
IBD-related surgeries: Total proctocolectomy and ileostomy
Item
Indicate if the patient has had any IBD-related surgeries 6=Total proctocolectomy and ileostomy
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0843044 (UMLS CUI [2])
IBD-related surgeries: Ileocecal resection
Item
Indicate if the patient has had any IBD-related surgeries 7=Ileocecal resection
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C2409568 (UMLS CUI [2])
IBD-related surgeries: Other
Item
Indicate if the patient has had any IBD-related surgeries 888=other
boolean
C0543467 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,3])
Method of IBD-related surgery: single-port laparoscopic surgery
Item
If the patient has received IBD-related surgery indicate the method of surgical procedure 0 = single-port laparoscopic surgery
boolean
C0021390 (UMLS CUI [1,1])
C0543467 (UMLS CUI [1,2])
C0332307 (UMLS CUI [1,3])
C0751429 (UMLS CUI [2,1])
C4087354 (UMLS CUI [2,2])
Method of IBD-related surgery: multiport laparoscopic surgery
Item
If the patient has received IBD-related surgery indicate the method of surgical procedure 1 = multiport laparoscopic surgery
boolean
C0021390 (UMLS CUI [1,1])
C0543467 (UMLS CUI [1,2])
C0332307 (UMLS CUI [1,3])
C0751429 (UMLS CUI [2,1])
C3880635 (UMLS CUI [2,2])
Method of IBD-related surgery
Item
If the patient has received IBD-related surgery indicate the method of surgical procedure 2 = conventional open surgery
boolean
C0021390 (UMLS CUI [1,1])
C0543467 (UMLS CUI [1,2])
C0332307 (UMLS CUI [1,3])
C0543467 (UMLS CUI [2,1])
C0348025 (UMLS CUI [2,2])
Date of IBD-related surgery
Item
Please indicate the date of surgery
date
C0021390 (UMLS CUI [1,1])
C1624150 (UMLS CUI [1,2])
Item
Indicate whether the patient currently has a stoma in situ at this point in time
integer
C1955856 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
Colectomy
Code List
Indicate whether the patient currently has a stoma in situ at this point in time
CL Item
Patient has not had colectomy (0)
C0009274 (UMLS CUI-1)
C1298908 (UMLS CUI-2)
(Comment:en)
CL Item
No stoma in situ (1)
C1955856 (UMLS CUI-1)
C1298908 (UMLS CUI-2)
(Comment:en)
CL Item
Yes, stoma in situ (2)
C1955856 (UMLS CUI-1)
(Comment:en)
Current medication for IBD: No
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 0=no IBD medication currently taken
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C1298908 (UMLS CUI [1,3])
Current medication for IBD: Steroids
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 1=Steroids
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C0038317 (UMLS CUI [2])
Current medication for IBD: Anti-TNF Agents
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 2=biologics – Anti-TNF Agents ( e.g. Adalimumab, Certolizumab pegol, Golimumab, Infliximab, Infliximab-dyyb)
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C0281481 (UMLS CUI [2])
Current medication for IBD: Integrin Receptor Antagonists
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 3=biologics - Integrin receptor antagonists (e.g. Natalizumab, Vedolizumab)
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C2917367 (UMLS CUI [2])
Current medication for IBD: Interleukin-antagonists
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 4=biologics - interleukin-antagonists (e.g. ustekinumab)
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C3653320 (UMLS CUI [2])
Current medication: Mesalamine
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 5=mesalamine (or mesalazine)
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C0127615 (UMLS CUI [2])
Current medication: Thiopurines or Methotrexate
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 6=thiopurines (e.g. azathioprine, 6-mercaptopurine) or methotrexate
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C0597573 (UMLS CUI [2])
C0025677 (UMLS CUI [3])
Current medication: other immunomodulators
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 7=other immunomodulators (e.g. mycophenylate, cyclosporine, tacrolimus)
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C1527392 (UMLS CUI [2,1])
C0205394 (UMLS CUI [2,2])
Current medication: other
Item
What type of medication for IBD does the patient currently take (regardless of when started)? 888=others (including probiotics, cellular therapy, nutritional, symptom control)
boolean
C0021390 (UMLS CUI [1,1])
C0746467 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,3])
Item
Was the patient in a colorectal cancer surveillance programme prior to their diagnosis of colorectal cancer?
integer
C4316665 (UMLS CUI [1])
Colorectal cancer surveillance programme
Code List
Was the patient in a colorectal cancer surveillance programme prior to their diagnosis of colorectal cancer?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (programme is available) (1)
C1298908 (UMLS CUI-1)
C0470187 (UMLS CUI-2)
C4316665 (UMLS CUI-3)
(Comment:en)
CL Item
No (no surveillance programme available) (2)
C1298908 (UMLS CUI-1)
C0332197 (UMLS CUI-2)
C4316665 (UMLS CUI-3)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
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