ID
40691
Beskrivning
ICHOM Craniofacial Microsomia data collection Version 1.0.4 April 18th, 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 Craniofacial Microsomia, the following conditions and treatment approaches (or interventions) are covered by our Standard Set: Conditions*: Patient population defined as: 2 major criteria or 1 major + 1 minor criteria or 3+ minor criteria Major criteria: Mandibular hypoplasia | Microtia | Orbital/facial bone hypoplasia Assymetric facial movement Minor criteria: Facial soft tissue deficiency | Pre-auricular tags | Macrostomia | Clefting Epibulbar dermoids | Hemivertabrae Treatment Approaches: Plastic Surgery | Maxillofacial Surgery | Dentistry and Orthodontics | Otolaryngology |Ophthalmology | Pediatrics | Speech and Language | Psychology/Psychiatry | Nursing | Feeding/Nutrition | Audiology | Social Care | * Excluded diagnoses: Mandibulofacial dysostosis with microcephaly, Townes-Brocks Syndrome, Treacher Collins Syndrome, Auriculocondylar Syndrome, Bixler Syndrome, Branchiootorenal (BOR) Syndrome, CHARGE Syndrome, Miller Syndrome, Nager Syndrome, Oculoauriculofrontonasal Syndrome, Parry Rhomborg, Branchiooculofacial Syndromes (BOFS), isolated typical Tessier clefting (with no associated facial hypoplasia). This document contains the 12 years old patient - Parent-reported Form. It has to be filled in when the patient is 12 years old. Collecting Patient-Reported Outcome Measures: Cleft Q - Patient/parent. As there is no permission for use of this questionnaire, only the subscores of each part will be included in this version of the standard set. For more information see: Klassen AF, Riff KWW, Longmire NM, et al. Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries. CMAJ. 2018;190(15):E455–E462. doi:10.1503/cmaj.170289, https://milo.mcmaster.ca/Copyrighted%20Works/questionnaires#Cleft-Q Young Person - CORE - Patient/parent. The YP-CORE is free for all health care organizations, and a license is not needed. Any organisation is free to reproduce the CORE Instruments in software, as well as on paper, under the terms of the Creative Commons Attribution-NoDerivatives 4.0 International (CC BY-ND 4.0) licence without payment of any licence fee. Hospital Anxiety and Depression Scale (HADS) – Patient. As there is no free licence for this scale, only the both two subscores (HADS Depression subscore, HADS Anxiety Suscore) will be included in this version of the standard set. Craniofacial Experiences Questionnaire (CFEQ) –Patient. The CFEQ is free for all health care organizations, and a license is not needed. For more information see: Roberts, R. M., & Shute, R. (2011). Living with a Craniofacial Condition: Development of the Craniofacial Experiences Questionnaire (CFEQ) for Adolescents and Their Parents. The Cleft Palate-Craniofacial Journal, 48(6), 727–735. PCC – Clinician. The PCC is free for all health care organizations, and a license is not needed. Intelligibility in Context Scale (ICS) - Parent/parent. The ICS is free for all health care organizations, and a license is not needed. For citation use CC 3.0 by-nc-nd. For more information see: http://www.csu.edu.au/research/multilingual-speech/ics WHO Growth Charts – Clinician. The WHO Growth Charts are free for all health care organizations, and a license is not needed. Pediatric Sleep Questionnaire (PSQ) – Parent. As a license agreement is needed for use of this questionnaire, only the total score will be includede in this version of the standard set. Distress Thermometer – Parent. As the source of the distress thermometer questions are not sure, only a text-item will be included in this version of the standard set. Phenotypic Assessment Tool (PAT-CFM) – Clinician. As a license agreement is needed for use of the PAT-CFM, only a text item is included in this version of the standard set. For more information see: Birgfeld C B, Luquetti D V, Gougoutas A J. et al.A phenotypic assessment tool for craniofacial microsomia. Plast Reconstr Surg. 2011;127(1):313–320. Ear Health-Related Quality of Life (HRQoL) - Patient/parent. The Ear HRQoL is free for all health care organizations, according to ICHOM. For more information see: Akter F, Mennie J C, Stewart K. et al. Patient reported outcome measures in microtia surgery. J Plast Reconstr Aesthet Surg. 2017 Mar;70(3):416-424. doi: 10.1016/j.bjps.2016.10.023. Epub 2016 Nov 23. COHIP Oral Symptoms Scale - Patient/parent: The COHIP is free for all health care organizations, according to ICHOM. For more information see: 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. The Standard set of ICHOM was supported by the Boston Children’s Hospital, the University Medical Center Rotterdam, the Great Ormond Street Hospital for Children and by th SickKids. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
Länk
Nyckelord
Versioner (3)
- 2019-11-19 2019-11-19 -
- 2019-11-23 2019-11-23 -
- 2020-04-30 2020-04-30 - Sarah Riepenhausen
Rättsinnehavare
ICHOM
Uppladdad den
30 april 2020
DOI
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Creative Commons BY-NC 4.0
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ICHOM Craniofacial Microsomia
12 years old patient - Parent-reported
- StudyEvent: ODM
Beskrivning
Health-related Quality of Life
Alias
- UMLS CUI-1
- C4279947
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0683547
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0683547
- UMLS CUI [2,3]
- C2826348
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C3169394
- UMLS CUI [2,3]
- C0439849
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0376634
- UMLS CUI [2,3]
- C1522634
- UMLS CUI [2,4]
- C0027361
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C3482948
- UMLS CUI [2,3]
- C0376634
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0871443
- UMLS CUI [2,3]
- C0423086
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C4330906
- UMLS CUI [2,3]
- C0376634
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0580094
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C1298908
- UMLS CUI [2,3]
- C3259648
- UMLS CUI [2,4]
- C0030767
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C3166351
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C1546466
- UMLS CUI [2,3]
- C0038039
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0033213
- UMLS CUI [2,3]
- C0030193
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0033213
- UMLS CUI [2,3]
- C0015672
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0033213
- UMLS CUI [2,3]
- C0031831
- UMLS CUI [2,4]
- C1706276
- UMLS CUI [2,5]
- C0237096
- UMLS CUI [3,1]
- C0008059
- UMLS CUI [3,2]
- C0033213
- UMLS CUI [3,3]
- C0011441
- UMLS CUI [3,4]
- C1706276
- UMLS CUI [3,5]
- C0237096
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C4330694
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0040809
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0543467
- UMLS CUI [2,3]
- C0233481
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C3274925
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0039869
- UMLS CUI [2,3]
- C0376634
- UMLS CUI [2,4]
- C0566251
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C0085537
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C4062112
- UMLS CUI [2,3]
- C0376634
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0085732
- UMLS CUI [2,3]
- C0085978
- UMLS CUI [2,4]
- C0376634
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C2700214
- UMLS CUI [2,3]
- C0439093
- UMLS CUI [2,4]
- C0030767
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C2984051
- UMLS CUI [2,3]
- C0439093
- UMLS CUI [2,4]
- C0030767
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0085862
- UMLS CUI [2,3]
- C0439093
- UMLS CUI [2,4]
- C0030767
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0582778
- UMLS CUI [2,3]
- C0018576
- UMLS CUI [2,4]
- C0439093
- UMLS CUI [2,5]
- C0205394
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C2700214
- UMLS CUI [2,3]
- C0027361
- UMLS CUI [2,4]
- C1705242
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C1527305
- UMLS CUI [2,3]
- C3810854
- UMLS CUI [2,4]
- C0681169
- UMLS CUI [2,5]
- C0439093
- UMLS CUI [2,6]
- C0030767
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0518076
- UMLS CUI [2,3]
- C1269765
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C1521721
- UMLS CUI [2,3]
- C0018724
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0556656
- UMLS CUI [2,3]
- C1549598
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C2828361
- UMLS CUI [2,3]
- C0205555
- UMLS CUI [2,4]
- C3843676
- UMLS CUI [2,5]
- C0018576
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0205555
- UMLS CUI [2,3]
- C1136188
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0205172
- UMLS CUI [2,3]
- C0004268
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0205172
- UMLS CUI [2,3]
- C3810854
- UMLS CUI [2,4]
- C0015576
- UMLS CUI [2,5]
- C0376634
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0018896
- UMLS CUI [2,3]
- C0027361
- UMLS CUI [2,4]
- C0205172
- UMLS CUI [2,5]
- C0004448
- UMLS CUI [2,6]
- C0018576
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0018896
- UMLS CUI [2,3]
- C0027361
- UMLS CUI [2,4]
- C0439849
- UMLS CUI [2,5]
- C0027361
- UMLS CUI [2,6]
- C1705242
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0332219
- UMLS CUI [2,3]
- C0516939
- UMLS CUI [2,4]
- C0439093
- UMLS CUI [2,5]
- C0030767
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0442821
- UMLS CUI [2,3]
- C0178647
- UMLS CUI [2,4]
- C0439093
- UMLS CUI [2,5]
- C0030767
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0596545
- UMLS CUI [1,3]
- C1446409
- UMLS CUI [1,4]
- C0597530
- UMLS CUI [1,5]
- C0034394
- UMLS CUI [2,1]
- C0008059
- UMLS CUI [2,2]
- C0237935
- UMLS CUI [2,3]
- C0031831
Beskrivning
Family Stress
Alias
- UMLS CUI-1
- C0015576
- UMLS CUI-2
- C0038435
Beskrivning
As the source of the distress thermometer questions are not sure, the actual 50 questions are not part of this version of the standard set. ICHOM OID's are: DT-P_Q01 to DT-P_Q50. Inclusion criteria: Parents of patients with craniofacial microsomia Timing: 2, 5, 8, 12 years Reporting Source: Parent-reported Type: Single answer
Datatyp
text
Alias
- UMLS CUI [1,1]
- C0231303
- UMLS CUI [1,2]
- C0034394
Beskrivning
Airway and Breathing
Alias
- UMLS CUI-1
- C0458827
- UMLS CUI-2
- C0035203
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0008059
- UMLS CUI [1,2]
- C0521116
- UMLS CUI [1,3]
- C1514873
- UMLS CUI [1,4]
- C0040590
Beskrivning
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0008059
- UMLS CUI [1,2]
- C0521116
- UMLS CUI [1,3]
- C1514873
- UMLS CUI [1,4]
- C0150683
Beskrivning
Speech
Alias
- UMLS CUI-1
- C0037817
Similar models
12 years old patient - Parent-reported
- StudyEvent: ODM
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0683547 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0683547 (UMLS CUI [2,2])
C2826348 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3169394 (UMLS CUI [2,2])
C0439849 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0376634 (UMLS CUI [2,2])
C1522634 (UMLS CUI [2,3])
C0027361 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3482948 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0871443 (UMLS CUI [2,2])
C0423086 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C4330906 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0580094 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C1298908 (UMLS CUI [2,2])
C3259648 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3166351 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C1546466 (UMLS CUI [2,2])
C0038039 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0033213 (UMLS CUI [2,2])
C0030193 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0033213 (UMLS CUI [2,2])
C0015672 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0033213 (UMLS CUI [2,2])
C0031831 (UMLS CUI [2,3])
C1706276 (UMLS CUI [2,4])
C0237096 (UMLS CUI [2,5])
C0008059 (UMLS CUI [3,1])
C0033213 (UMLS CUI [3,2])
C0011441 (UMLS CUI [3,3])
C1706276 (UMLS CUI [3,4])
C0237096 (UMLS CUI [3,5])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C4330694 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0040809 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0543467 (UMLS CUI [2,2])
C0233481 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3274925 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0039869 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
C0566251 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C4062112 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0085732 (UMLS CUI [2,2])
C0085978 (UMLS CUI [2,3])
C0376634 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2700214 (UMLS CUI [2,2])
C0439093 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2984051 (UMLS CUI [2,2])
C0439093 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0085862 (UMLS CUI [2,2])
C0439093 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0582778 (UMLS CUI [2,2])
C0018576 (UMLS CUI [2,3])
C0439093 (UMLS CUI [2,4])
C0205394 (UMLS CUI [2,5])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2700214 (UMLS CUI [2,2])
C0027361 (UMLS CUI [2,3])
C1705242 (UMLS CUI [2,4])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C1527305 (UMLS CUI [2,2])
C3810854 (UMLS CUI [2,3])
C0681169 (UMLS CUI [2,4])
C0439093 (UMLS CUI [2,5])
C0030767 (UMLS CUI [2,6])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0518076 (UMLS CUI [2,2])
C1269765 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C1521721 (UMLS CUI [2,2])
C0018724 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0556656 (UMLS CUI [2,2])
C1549598 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2828361 (UMLS CUI [2,2])
C0205555 (UMLS CUI [2,3])
C3843676 (UMLS CUI [2,4])
C0018576 (UMLS CUI [2,5])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0205555 (UMLS CUI [2,2])
C1136188 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0205172 (UMLS CUI [2,2])
C0004268 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0205172 (UMLS CUI [2,2])
C3810854 (UMLS CUI [2,3])
C0015576 (UMLS CUI [2,4])
C0376634 (UMLS CUI [2,5])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0018896 (UMLS CUI [2,2])
C0027361 (UMLS CUI [2,3])
C0205172 (UMLS CUI [2,4])
C0004448 (UMLS CUI [2,5])
C0018576 (UMLS CUI [2,6])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0018896 (UMLS CUI [2,2])
C0027361 (UMLS CUI [2,3])
C0439849 (UMLS CUI [2,4])
C0027361 (UMLS CUI [2,5])
C1705242 (UMLS CUI [2,6])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0332219 (UMLS CUI [2,2])
C0516939 (UMLS CUI [2,3])
C0439093 (UMLS CUI [2,4])
C0030767 (UMLS CUI [2,5])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0442821 (UMLS CUI [2,2])
C0178647 (UMLS CUI [2,3])
C0439093 (UMLS CUI [2,4])
C0030767 (UMLS CUI [2,5])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0237935 (UMLS CUI [2,2])
C0031831 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0034394 (UMLS CUI [1,2])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0040590 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0150683 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C0008059 (UMLS CUI [2,1])
C4304747 (UMLS CUI [2,2])
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)