ID
37537
Descrizione
ICHOM Cleft Lip and Palate Study 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/ 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.
collegamento
Keywords
versioni (4)
- 06/08/19 06/08/19 -
- 12/08/19 12/08/19 -
- 30/04/20 30/04/20 - Sarah Riepenhausen
- 20/09/21 20/09/21 -
Titolare del copyright
ICHOM
Caricato su
6 agosto 2019
DOI
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Licenza
Creative Commons BY-NC 3.0
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ICHOM Cleft Lip and Palate
Baseline - Clinical Form
- StudyEvent: ODM
Descrizione
Demographic factors
Alias
- UMLS CUI-1
- C1704791
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0079399
Descrizione
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
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0034510
Descrizione
Baseline Clinical Status
Alias
- UMLS CUI-1
- C0449440
- UMLS CUI-2
- C1442488
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo di dati
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0683312
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo di dati
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0205092
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo di dati
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0238767
Descrizione
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
Tipo di dati
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
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo di dati
integer
Alias
- UMLS CUI [1,1]
- C1534709
- UMLS CUI [1,2]
- C0447411
- UMLS CUI [1,3]
- C0439793
- UMLS CUI [1,4]
- C0227130
Descrizione
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
Tipo di dati
integer
Alias
- UMLS CUI [1,1]
- C0700374
- UMLS CUI [1,2]
- C0008925
- UMLS CUI [1,3]
- C0008902
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo di dati
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0596612
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0596612
Descrizione
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
Tipo di dati
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0026882
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0026882
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C1298908
- UMLS CUI [2,2]
- C2359476
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C3277906
- UMLS CUI [3]
- C0741916
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
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
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0424605
- UMLS CUI [3]
- C0851265
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0004936
- UMLS CUI [3]
- C0004930
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0009450
- UMLS CUI [3,1]
- C0040549
- UMLS CUI [3,2]
- C0012634
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
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
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
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
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
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
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C2709248
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3]
- C1709770
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
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
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
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
Descrizione
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo di dati
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)
(Comment:en)
(Comment:en)
C1442488 (UMLS CUI-2)
C0683312 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0439793 (UMLS CUI [1,2])
C0205092 (UMLS CUI [1,3])
(Comment:en)
(Comment:en)
C0023759 (UMLS CUI-2)
(Comment:en)
C0439793 (UMLS CUI [1,2])
C0238767 (UMLS CUI [1,3])
(Comment:en)
(Comment:en)
C0023759 (UMLS CUI-2)
(Comment:en)
(Comment:en)
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])
C0227130 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
(Comment:en)
C0008925 (UMLS CUI [1,2])
C0008902 (UMLS CUI [1,3])
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
(Comment:en)
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])