ID
44385
Description
ICHOM Cleft Lip and Palate data collection Version 3.0.6 Revised: March 20th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://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. For Cleft Lip and Palate, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Cleft Lip | Cleft Palate | Cleft Lip and Alveolus | Cleft Lip and Palate | Robin Sequence | 22q11 | CL&P Associated with Other Craniofacial Abnormalities | CL&P Associated with Other Congenital Abnormalities Treatment approaches: Audiology | Otology | Speech/Communication | Feeding/Nutrition | Plastic Surgery | Oral & Maxillofacial Surgery | Dentistry | Orthodontics | Pediatrics | Nursing | Genetics | Social Work | Psychology/Psychiatry This document contains the Baseline - Clinical Form. It has to be filled in at index event (first doctor’s visit). Collecting Patient-Reported Outcome Measure: CLEFT-Q. As there is no permission for publication of this questionnaire on this portal, only the total score will be included in this version of the standard set. Nasal Obstruction NOSE Scale-Patient . The study for development and validation of the NOSE Scale was funded by the AAO-HNS/F. If others wish to use the tool, there is no cost, but the study should be referenced: Stewart MG, Witsell DL, Smith TL, Weaver EM, Yueh B, Hannley MT. Development and validation of the Nasal Obstruction Symptom Evaluation (NOSE) scale. Otolaryngol Head Neck Surg 2004;130:157-63. COHIP Oral Symptoms Scale-Patient. The COHIP is free for all health care organizations, and a license is not needed according to ICHOM. Broder HL, McGrath C, Cisneros GJ. Questionnaire development: Face validity and item impact testing of the child oral health impact profile Community Dent Oral Epidemiol 2007; 35 Suppl 1:8-19. Intelligibility in Context Scale (ICS)-Parent. The ICS is free for all health care organizations, and a license is not needed (according to ICHOM). McLeod, S., Harrison, L. J., & McCormack, J. (2012). Intelligibility in Context Scale. Bathurst, NSW, Australia: Charles Sturt University. Available at http://www.csu.edu.au/research/multilingual-speech/ics under CC 3.0 by-nc-nd. PCC-Clinician. The PCC is free for all health care organizations, and a license is not needed. Reference: Allori, A. C., Kelley, T., Meara, J. G., Albert, A., Bonanthaya, K., Chapman, K., … Wong, K. W. (2017). A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care. The Cleft Palate-Craniofacial Journal, 54(5), 540–554 The Standard set of ICHOM was supported by the Boston Children’s Hospital, The Children’s Hospital of Philadelphia. Texas Children’s Hospital and the Great Ormond Street Hospital. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
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Versions (4)
- 8/6/19 8/6/19 -
- 8/12/19 8/12/19 -
- 4/30/20 4/30/20 - Sarah Riepenhausen
- 9/20/21 9/20/21 -
Copyright Holder
ICHOM
Uploaded on
September 20, 2021
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Creative Commons BY-NC 4.0
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ICHOM Cleft Lip and Palate
Baseline - Clinical Form
- StudyEvent: ODM
Description
Demographic factors
Alias
- UMLS CUI-1
- C1704791
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C0079399
Description
In the original form response option is N/A. A codelist ist not included because it varies by country and should be determined by country (not for cross-country comparison). INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer
Data type
text
Alias
- UMLS CUI [1]
- C0034510
Description
Baseline Clinical Status
Alias
- UMLS CUI-1
- C0449440
- UMLS CUI-2
- C1442488
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0683312
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0205092
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0238767
Description
Note: This item does not exist in the original standard set. If you tick "Asymmetric" in the item "PHENSEVBI", you can fill in this item additionally for specification. INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Free text
Data type
text
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0238767
- UMLS CUI [2,1]
- C2348235
- UMLS CUI [2,2]
- C0332514
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C1534709
- UMLS CUI [1,2]
- C0447411
- UMLS CUI [1,3]
- C0439793
Description
SUPPORTING DEFINITION: Veau I: Cleft of soft palate only Veau II: Midline cleft of secondary hard and soft palate Veau III: Unilateral cleft of hard and soft palate, including alveolus Veau IV: Bilateral cleft of hard and soft palate, including both alveoli INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0008902
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0596612
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0596612
Description
INCLUSION CRITERIA: All patients If answered 'yes' that the patient has a genetically confirmed mutation that is known to be associated with cleft lip and palate (GENETICSYN) TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0026882
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0026882
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C1298908
- UMLS CUI [2,2]
- C2359476
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C3277906
- UMLS CUI [3]
- C0741916
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0042066
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0042066
- UMLS CUI [3,2]
- C3887504
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0424605
- UMLS CUI [3]
- C0851265
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0004936
- UMLS CUI [3]
- C0004930
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0009450
- UMLS CUI [3,1]
- C0040549
- UMLS CUI [3,2]
- C0012634
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0521362
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0521362
- UMLS CUI [3,2]
- C3887504
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0026860
- UMLS CUI [2,2]
- C3887504
- UMLS CUI [3,1]
- C0026860
- UMLS CUI [3,2]
- C1704258
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0205394
- UMLS CUI [2,2]
- C0037303
- UMLS CUI [2,3]
- C0024947
- UMLS CUI [2,4]
- C1704258
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C2709248
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3]
- C1709770
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0279810
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0279810
- UMLS CUI [3,2]
- C3887504
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0205470
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0205470
- UMLS CUI [3,2]
- C3887504
Description
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Data type
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0027853
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0027853
- UMLS CUI [3,2]
- C3887504
Similar models
Baseline - Clinical Form
- StudyEvent: ODM
(Comment:en)
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C1442488 (UMLS CUI-2)
C0683312 (UMLS CUI [1,2])
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C0439793 (UMLS CUI [1,2])
C0205092 (UMLS CUI [1,3])
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C0023759 (UMLS CUI-2)
(Comment:en)
C0439793 (UMLS CUI [1,2])
C0238767 (UMLS CUI [1,3])
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C0023759 (UMLS CUI-2)
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C0439793 (UMLS CUI [1,2])
C0238767 (UMLS CUI [1,3])
C2348235 (UMLS CUI [2,1])
C0332514 (UMLS CUI [2,2])
C0447411 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
(Comment:en)
(Comment:en)
(Comment:en)
C0008902 (UMLS CUI [1,2])
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
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C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205448 (UMLS CUI-4)
(Comment:en)
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205449 (UMLS CUI-4)
(Comment:en)
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205450 (UMLS CUI-4)
(Comment:en)
C0596612 (UMLS CUI [1,2])
C4321245 (UMLS CUI [2,1])
C0596612 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
C0026882 (UMLS CUI [1,2])
C4321245 (UMLS CUI [2,1])
C0026882 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
C3277906 (UMLS CUI [2])
C0741916 (UMLS CUI [3])
C0042066 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])