ID
37625
Descripción
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.
Link
Palabras clave
Versiones (4)
- 6/8/19 6/8/19 -
- 12/8/19 12/8/19 -
- 30/4/20 30/4/20 - Sarah Riepenhausen
- 20/9/21 20/9/21 -
Titular de derechos de autor
ICHOM
Subido en
12 de agosto de 2019
DOI
Para solicitar uno, por favor iniciar sesión.
Licencia
Creative Commons BY-NC 3.0
Comentarios del modelo :
Puede comentar sobre el modelo de datos aquí. A través de las burbujas de diálogo en los grupos de elementos y elementos, puede agregar comentarios específicos.
Comentarios de grupo de elementos para :
Comentarios del elemento para :
Para descargar modelos de datos, debe haber iniciado sesión. Por favor iniciar sesión o Registrate gratis.
ICHOM Cleft Lip and Palate
Baseline - Clinical Form
- StudyEvent: ODM
Descripción
Demographic factors
Alias
- UMLS CUI-1
- C1704791
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer
Tipo de datos
integer
Alias
- UMLS CUI [1]
- C0079399
Descripción
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 datos
text
Alias
- UMLS CUI [1]
- C0034510
Descripción
Baseline Clinical Status
Alias
- UMLS CUI-1
- C0449440
- UMLS CUI-2
- C1442488
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0683312
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0205092
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0008924
- UMLS CUI [1,2]
- C0439793
- UMLS CUI [1,3]
- C0238767
Descripción
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 datos
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
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C1534709
- UMLS CUI [1,2]
- C0447411
- UMLS CUI [1,3]
- C0439793
Descripción
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 datos
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0008902
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer
Tipo de datos
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0596612
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0596612
Descripción
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 datos
integer
Alias
- UMLS CUI [1,1]
- C0008925
- UMLS CUI [1,2]
- C0026882
- UMLS CUI [2,1]
- C4321245
- UMLS CUI [2,2]
- C0026882
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C1298908
- UMLS CUI [2,2]
- C2359476
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C3277906
- UMLS CUI [3]
- C0741916
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
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
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0424605
- UMLS CUI [3]
- C0851265
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0004936
- UMLS CUI [3]
- C0004930
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0009450
- UMLS CUI [3,1]
- C0040549
- UMLS CUI [3,2]
- C0012634
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
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
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
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
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
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
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C2709248
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3]
- C1709770
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
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
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
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
Descripción
INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""
Tipo de datos
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])