English

Baseline - 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

integer

Alias
UMLS CUI [1]
C1269815
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
Indicate the patient’s sex at birth
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is the patient's/your ethnicity?
Description

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

Data type

text

Alias
UMLS CUI [1]
C0034510
Baseline Clinical Status
Description

Baseline Clinical Status

Alias
UMLS CUI-1
C0449440
UMLS CUI-2
C1442488
Indicate the patient’s category
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0683312
Indicate the patient’s severity of lip
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008924
UMLS CUI [1,2]
C0439793
UMLS CUI [1,3]
C0205092
Indicate the patient’s severity of lip
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008924
UMLS CUI [1,2]
C0439793
UMLS CUI [1,3]
C0238767
Specification of asymmetric lip
Description

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

Data type

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
Indicate the patient’s severity of alveolus
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1534709
UMLS CUI [1,2]
C0447411
UMLS CUI [1,3]
C0439793
Indicate the patient’s classification of palate
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008925
UMLS CUI [1,2]
C0008902
Indicate if the patient has a genetically confirmed mutation that is known to be associated with cleft lip and palate
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008925
UMLS CUI [1,2]
C0596612
UMLS CUI [2,1]
C4321245
UMLS CUI [2,2]
C0596612
Indicate which mutation
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008925
UMLS CUI [1,2]
C0026882
UMLS CUI [2,1]
C4321245
UMLS CUI [2,2]
C0026882
Indicate if the patient has any of the following comorbidities 0 = No other diseases
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
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
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]
C0741916
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
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
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
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
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
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
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
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
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
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
Indicate if the patient has any of the following comorbidities 7 = Musculoskeletal anomalies or dysfunction
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
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
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
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
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
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
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
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
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
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
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
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Similar models

Baseline - 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
integer
C1269815 (UMLS CUI [1])
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
Item
Indicate the patient’s sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
Code List
Indicate the patient’s sex at birth
CL Item
Male (1)
C1706180 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Race/ethnicity
Item
What is the patient's/your ethnicity?
text
C0034510 (UMLS CUI [1])
Item Group
Baseline Clinical Status
C0449440 (UMLS CUI-1)
C1442488 (UMLS CUI-2)
Item
Indicate the patient’s category
integer
C0031437 (UMLS CUI [1,1])
C0683312 (UMLS CUI [1,2])
Phenotype: Patient category
Code List
Indicate the patient’s category
CL Item
Cleft lip (1)
C0008924 (UMLS CUI-1)
(Comment:en)
CL Item
Cleft palate (2)
C0008925 (UMLS CUI-1)
(Comment:en)
CL Item
Cleft lip and alveolus  (3)
C1298692 (UMLS CUI-1)
(Comment:en)
CL Item
Cleft lip and palate (4)
C0158646 (UMLS CUI-1)
(Comment:en)
Item
Indicate the patient’s severity of lip
integer
C0008924 (UMLS CUI [1,1])
C0439793 (UMLS CUI [1,2])
C0205092 (UMLS CUI [1,3])
Phenotype: Patient category
Code List
Indicate the patient’s severity of lip
CL Item
Complete (1)
C0205197 (UMLS CUI-1)
(Comment:en)
CL Item
Incomplete  (2)
C0205257 (UMLS CUI-1)
(Comment:en)
CL Item
Lesser-form (3)
C0547044 (UMLS CUI-1)
C0023759 (UMLS CUI-2)
(Comment:en)
Item
Indicate the patient’s severity of lip
integer
C0008924 (UMLS CUI [1,1])
C0439793 (UMLS CUI [1,2])
C0238767 (UMLS CUI [1,3])
Phenotype: Severity of lip (bilateral)
Code List
Indicate the patient’s severity of lip
CL Item
Complete (1)
C0205197 (UMLS CUI-1)
(Comment:en)
CL Item
Incomplete (2)
C0205257 (UMLS CUI-1)
(Comment:en)
CL Item
Lesser-form (3)
C0547044 (UMLS CUI-1)
C0023759 (UMLS CUI-2)
(Comment:en)
CL Item
Asymmetric (specify severity of each side) (4)
C0332514 (UMLS CUI-1)
(Comment:en)
Specification of asymmetric lip
Item
Specification of asymmetric lip
text
C0008924 (UMLS CUI [1,1])
C0439793 (UMLS CUI [1,2])
C0238767 (UMLS CUI [1,3])
C2348235 (UMLS CUI [2,1])
C0332514 (UMLS CUI [2,2])
Item
Indicate the patient’s severity of alveolus
integer
C1534709 (UMLS CUI [1,1])
C0447411 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
Phenotype: Patient category
Code List
Indicate the patient’s severity of alveolus
CL Item
Complete (1)
C0205197 (UMLS CUI-1)
(Comment:en)
CL Item
Incomplete  (2)
C0205257 (UMLS CUI-1)
(Comment:en)
CL Item
Notched (3)
C0205316 (UMLS CUI-1)
(Comment:en)
Item
Indicate the patient’s classification of palate
integer
C0008925 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
Phenotype: Patient category
Code List
Indicate the patient’s classification of palate
CL Item
Veau I (1)
C0700374 (UMLS CUI-1)
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
(Comment:en)
CL Item
Veau II (2)
C0700374 (UMLS CUI-1)
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205448 (UMLS CUI-4)
(Comment:en)
CL Item
Veau III (3)
C0700374 (UMLS CUI-1)
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205449 (UMLS CUI-4)
(Comment:en)
CL Item
Veau IV (4)
C0700374 (UMLS CUI-1)
C0008925 (UMLS CUI-2)
C0008902 (UMLS CUI-3)
C0205450 (UMLS CUI-4)
(Comment:en)
Item
Indicate if the patient has a genetically confirmed mutation that is known to be associated with cleft lip and palate
integer
C0008925 (UMLS CUI [1,1])
C0596612 (UMLS CUI [1,2])
C4321245 (UMLS CUI [2,1])
C0596612 (UMLS CUI [2,2])
Syndrome/genetic diagnosis
Code List
Indicate if the patient has a genetically confirmed mutation that is known to be associated with cleft lip and palate
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate which mutation
integer
C0008925 (UMLS CUI [1,1])
C0026882 (UMLS CUI [1,2])
C4321245 (UMLS CUI [2,1])
C0026882 (UMLS CUI [2,2])
Syndrome/genetic diagnosis
Code List
Indicate which mutation
CL Item
22q11 (1)
C0935660 (UMLS CUI-1)
(Comment:en)
CL Item
Robin Sequence (2)
C0031900 (UMLS CUI-1)
(Comment:en)
CL Item
Stickler Syndrome  (3)
C0265253 (UMLS CUI-1)
(Comment:en)
CL Item
Treacher Collins (4)
C1855433 (UMLS CUI-1)
(Comment:en)
CL Item
Van der Woude (5)
C0175697 (UMLS CUI-1)
(Comment:en)
CL Item
Other (888)
C0205394 (UMLS CUI-1)
(Comment:en)
Comorbidities: No other diseases
Item
Indicate if the patient has any of the following comorbidities 0 = No other diseases
boolean
C0009488 (UMLS CUI [1])
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
Comorbidities: Cardiac anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C3277906 (UMLS CUI [2])
C0741916 (UMLS CUI [3])
Comorbidities: GU anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0042066 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Developmental delay or learning difficulty
Item
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
boolean
C0009488 (UMLS CUI [1])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
Comorbidities: Psychiatric or behavior disorder
Item
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
boolean
C0009488 (UMLS CUI [1])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
Comorbidities: Infection or toxin mediated disease
Item
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
boolean
C0009488 (UMLS CUI [1])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
Comorbidities: GI anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Musculoskeletal anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 7 = Musculoskeletal anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities: Other craniomaxillofacial anomalies
Item
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
boolean
C0009488 (UMLS CUI [1])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
Comorbidities: Pulmonary anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
Comorbidities: Hematological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Immunological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Neurological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
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