ID
37625
Descrição
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.
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Versões (4)
- 06/08/2019 06/08/2019 -
- 12/08/2019 12/08/2019 -
- 30/04/2020 30/04/2020 - Sarah Riepenhausen
- 20/09/2021 20/09/2021 -
Titular dos direitos
ICHOM
Transferido a
12 de agosto de 2019
DOI
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Licença
Creative Commons BY-NC 3.0
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ICHOM Cleft Lip and Palate
Baseline - Clinical Form
- StudyEvent: ODM
Descrição
Demographic factors
Alias
- UMLS CUI-1
- C1704791
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1]
- C0079399
Descrição
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 de dados
text
Alias
- UMLS CUI [1]
- C0034510
Descrição
Baseline Clinical Status
Alias
- UMLS CUI-1
- C0449440
- UMLS CUI-2
- C1442488
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0683312
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0205092
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0238767
Descrição
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 de dados
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
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C1534709
- UMLS CUI [1,2]
- C0447411
- UMLS CUI [1,3]
- C0439793
Descrição
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 de dados
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0008902
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0596612
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0596612
Descrição
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 de dados
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0026882
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0026882
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C1298908
- UMLS CUI [2,2]
- C2359476
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C3277906
- UMLS CUI [3]
- C0741916
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
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
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0424605
- UMLS CUI [3]
- C0851265
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0004936
- UMLS CUI [3]
- C0004930
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0009450
- UMLS CUI [3,1]
- C0040549
- UMLS CUI [3,2]
- C0012634
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
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
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
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
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
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
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C2709248
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3]
- C1709770
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
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
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
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
Descrição
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de dados
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])
(Comment:en)
(Comment:en)
(Comment:en)
C0008902 (UMLS CUI [1,2])
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])