ID
40640
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 Follow-up (22 years) - Clinical Form. It has to be filled in 22 years after Baseline index event. 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 (3)
- 07-08-19 07-08-19 -
- 12-08-19 12-08-19 -
- 30-04-20 30-04-20 - Sarah Riepenhausen
Copyright Holder
ICHOM
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30 april 2020
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Creative Commons BY-NC 4.0
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ICHOM Cleft Lip and Palate
Follow-up (22 years) - Clinical Form
- StudyEvent: ODM
Description
Follow-up Clinical Status
Alias
- UMLS CUI-1
- C0589120
- UMLS CUI-2
- C0205210
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 [3,1]
- C0232164
- 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]
- 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
Description
Treatment
Alias
- UMLS CUI-1
- C0087111
Description
INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C1302313
- UMLS CUI [1,2]
- C1518988
Description
INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C1302313
- UMLS CUI [1,2]
- C4696991
Description
INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0030704
- UMLS CUI [1,2]
- C0184681
Description
INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0030704
- UMLS CUI [1,2]
- C0439787
Description
Degree of health
Alias
- UMLS CUI-1
- C0018759
Description
INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical
Data type
boolean
Alias
- UMLS CUI [1,1]
- C0700364
- UMLS CUI [1,2]
- C0015450
Description
INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C1299894
Description
INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C0596028
Description
INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 22 years REPORTING SOURCE: Clinical TYPE: Single answer
Data type
boolean
Alias
- UMLS CUI [1]
- C0407698
Description
SUPPORTING DEFINITION: Speech assessment material can be found at https://clispi.org/node/15 Definition of Normal/ Not Normal: 5 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <91%) 12 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <95%) 22 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <98%) INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Single Answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0439165
- UMLS CUI [1,2]
- C0871699
- UMLS CUI [1,3]
- C2349182
Description
SUPPORTING DEFINITION: Marginally incompetent: evidence of minor problems suggesting borderline closure Incompetent: evidence of significant problems usually requiring surgical management INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Single Answer
Data type
integer
Alias
- UMLS CUI [1]
- C4027435
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Follow-up (22 years) - Clinical Form
- StudyEvent: ODM
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C3887504 (UMLS CUI [3,2])
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(Comment:en)
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(Comment:en)
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C0184681 (UMLS CUI [1,2])
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(Comment:en)
C0596028 (UMLS CUI-2)
C0205103 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
C0205449 (UMLS CUI-5)
C0439200 (UMLS CUI-6)
(Comment:en)
(Comment:en)
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C0205103 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
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