English

5 and 11 ages follow-up - Clinical Form

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Description

This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

Data type

text

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline
Description

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Patient Demographic Factors
Description

Patient Demographic Factors

Alias
UMLS CUI-1
C1704791
Indicate the age at each clinical evaluation
Description

Inclusion Criteria: All patients Timing: On all forms Data Source: Clinical, parent-reported, or patient-reported Type: Single answer Response Options: Years and fractions

Data type

integer

Alias
UMLS CUI [1]
C0001779
Indicate the patient’s insurance status
Description

Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1548070
Clinical Status
Description

Clinical Status

Alias
UMLS CUI-1
C0449440
Indicate whether the patient has any comorbidities
Description

Inclusion Criteria: All patients Timing: On all forms Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0009488
Indicate if the patient has any of the following comorbidities 0 = No other diseases
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C1298908
UMLS CUI [2,2]
C2359476
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C3277906
UMLS CUI [3,1]
C0232164
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0042066
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0042066
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0424605
UMLS CUI [3]
C0851265
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0004936
UMLS CUI [3]
C0004930
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0009450
UMLS CUI [3,1]
C0040549
UMLS CUI [3,2]
C0012634
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0521362
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0521362
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 7 = Other musculoskeletal anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0026860
UMLS CUI [2,2]
C3887504
UMLS CUI [3,1]
C0026860
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0205394
UMLS CUI [2,2]
C0037303
UMLS CUI [2,3]
C0024947
UMLS CUI [2,4]
C1704258
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C2709248
UMLS CUI [2,2]
C1704258
UMLS CUI [3]
C1709770
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0279810
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0279810
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0205470
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0205470
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0027853
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0027853
UMLS CUI [3,2]
C3887504
Other
Description

Other

Alias
UMLS CUI-1
C0205394
Indicate if the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
Description

Inclusion Criteria: All patients Timing: Pre-Intervention, 5 and 11 ages follow-up Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C1518988
Degree of Health
Description

Degree of Health

Alias
UMLS CUI-1
C0018759
Indicate who is completing the PROMs
Description

Supporting Definition: PROMs refer to patient-, parent- or proxy-reported tools Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4038447
Indicate the distance visual acuity measured uncorrected in the right eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C4072785
UMLS CUI [1,5]
C0229089
Indicate the distance visual acuity measured best corrected in the right eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C1690532
UMLS CUI [1,5]
C0229089
Indicate the distance visual acuity measured uncorrected in the left eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C4072785
UMLS CUI [1,5]
C0229090
Indicate the distance visual acuity measured best corrected in the left eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C1690532
UMLS CUI [1,5]
C0229090
Has the patient been evaluated to rule out ambliopia?
Description

Inclusion Criteria: All patients Timing: Baseline, 5 and 11 ages Follow-up Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0002418
UMLS CUI [1,2]
C2911685
Indicate the severity of the facial paralysis using the eFACE composite "Smile" score
Description

Supporting Definition: Based on eFACE Inclusion Criteria: Age >3y Timing: On all forms Data Source: Clinician/Administrative data Type: Numerical value Response Options: Numerical

Data type

integer

Alias
UMLS CUI [1,1]
C3846158
UMLS CUI [1,2]
C0449820
UMLS CUI [1,3]
C0439793
UMLS CUI [1,4]
C0015469
UMLS CUI [2]
C0517048
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Similar models

5 and 11 ages follow-up - Clinical Form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
text
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Patient Demographic Factors
C1704791 (UMLS CUI-1)
Age
Item
Indicate the age at each clinical evaluation
integer
C0001779 (UMLS CUI [1])
Item
Indicate the patient’s insurance status
integer
C1548070 (UMLS CUI [1])
Insurance status
Code List
Indicate the patient’s insurance status
CL Item
Uninsured (0)
C0087134 (UMLS CUI-1)
(Comment:en)
CL Item
Private insurance (1)
C3845555 (UMLS CUI-1)
(Comment:en)
CL Item
Governmental insurance (2)
C0021682 (UMLS CUI-1)
(Comment:en)
Item Group
Clinical Status
C0449440 (UMLS CUI-1)
Item
Indicate whether the patient has any comorbidities
integer
C0009488 (UMLS CUI [1])
Patient Comorbidities
Code List
Indicate whether the patient has any comorbidities
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Comorbidities of paediatric patient: No other disease
Item
Indicate if the patient has any of the following comorbidities 0 = No other diseases
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
Comorbidities of paediatric patient: Cardiac anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C3277906 (UMLS CUI [2])
C0232164 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GU anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0042066 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Developmental delay or learning difficulty
Item
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
Comorbidities of paediatric patient: Psychiatric or behavior disorder
Item
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
Comorbidities of paediatric patient: Infection or toxin mediated disease
Item
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GI anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other musculoskeletal anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 7 = Other musculoskeletal anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other craniomaxillofacial anomalies
Item
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
Comorbidities of paediatric patient: Pulmonary anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
Comorbidities of paediatric patient: Hematological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Immunological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Neurological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Item Group
Other
C0205394 (UMLS CUI-1)
Item
Indicate if the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
integer
C1302313 (UMLS CUI [1,1])
C1518988 (UMLS CUI [1,2])
Patient Comorbidities
Code List
Indicate if the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item Group
Degree of Health
C0018759 (UMLS CUI-1)
Item
Indicate who is completing the PROMs
integer
C4038447 (UMLS CUI [1])
Reporting source of PROM
Code List
Indicate who is completing the PROMs
CL Item
Patient (1)
C0030705 (UMLS CUI-1)
(Comment:en)
CL Item
Parent/proxy (2)
C0030551 (UMLS CUI-1)
C0600420 (UMLS CUI-2)
(Comment:en)
Visual acuity using Snellen chart, uncorrected right eye
Item
Indicate the distance visual acuity measured uncorrected in the right eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C4072785 (UMLS CUI [1,4])
C0229089 (UMLS CUI [1,5])
Visual acuity using Snellen chart, best corrected right eye
Item
Indicate the distance visual acuity measured best corrected in the right eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C1690532 (UMLS CUI [1,4])
C0229089 (UMLS CUI [1,5])
Visual acuity using Snellen chart, uncorrected left eye
Item
Indicate the distance visual acuity measured uncorrected in the left eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C4072785 (UMLS CUI [1,4])
C0229090 (UMLS CUI [1,5])
Visual acuity using Snellen chart, best corrected left eye
Item
Indicate the distance visual acuity measured best corrected in the left eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C1690532 (UMLS CUI [1,4])
C0229090 (UMLS CUI [1,5])
Item
Has the patient been evaluated to rule out ambliopia?
integer
C0002418 (UMLS CUI [1,1])
C2911685 (UMLS CUI [1,2])
Patient Comorbidities
Code List
Has the patient been evaluated to rule out ambliopia?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
eFACE scoring
Item
Indicate the severity of the facial paralysis using the eFACE composite "Smile" score
integer
C3846158 (UMLS CUI [1,1])
C0449820 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
C0015469 (UMLS CUI [1,4])
C0517048 (UMLS CUI [2])
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