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22 years old patient - Clinical-reported

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Administrative Data
Beschrijving

Administrative Data

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

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: Patients with craniofacial microsomia TIMING: On all forms REPORTING SOURCE: Administrative data RESPONSE OPTIONS: According to institution

Datatype

integer

Alias
UMLS CUI [1]
C1269815
Patient characteristics
Beschrijving

Patient characteristics

Alias
UMLS CUI-1
C0815172
Please calculate Asymmetry score?
Beschrijving

Supporting Definition:Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: All time points Reporting Source: Clinician-reported Type: Numerical value Response option: Numerical value

Datatype

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0376634
UMLS CUI [1,3]
C0332514
Hearing
Beschrijving

Hearing

Alias
UMLS CUI-1
C0018767
Audiogram (bone conduction and air conduction; right ear and left ear, with and without aiding)
Beschrijving

Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12, 22 years Reporting Source: Clinician-reported Type: Numerical value; dB Response option: Free text

Datatype

text

Maateenheden
  • dB
Alias
UMLS CUI [1]
C0004286
dB
Speech
Beschrijving

Speech

Alias
UMLS CUI-1
C0037817
Indicate the percent consonants
Beschrijving

Supporting definition: Speech assessment material can be found at https://clispi.org/node/15 Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 8 , 12, 22 years Reporting Source: Clinician-reported Type: Single answer

Datatype

integer

Alias
UMLS CUI [1,1]
C0439165
UMLS CUI [1,2]
C0871699
UMLS CUI [1,3]
C2349182
Appearance
Beschrijving

Appearance

Alias
UMLS CUI-1
C0700364
Phenotypic Assessment Tool questionnaire
Beschrijving

As a license agreement is needed for use of the PAT-CFM, the actual 13 (26) questions are not part of this version of the standard set. ICHOM OID's are: PATCFM_Q01 to PATCFM_Q13, each question is devided into an A and B version (e.g. PATCFM_Q01A, PATCFM_Q01B). Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 8 , 12, 22 years Reporting Source: Clinician-reported Type: Multiple answers

Datatype

text

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C1516048
UMLS CUI [1,3]
C0376634
UMLS CUI [1,4]
C0034394
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Similar models

22 years old patient - Clinical-reported

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
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
Patient characteristics
C0815172 (UMLS CUI-1)
Phenotype: Asymmetry
Item
Please calculate Asymmetry score?
integer
C0031437 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
C0332514 (UMLS CUI [1,3])
Item Group
Hearing
C0018767 (UMLS CUI-1)
Audiogram
Item
Audiogram (bone conduction and air conduction; right ear and left ear, with and without aiding)
text
C0004286 (UMLS CUI [1])
Item Group
Speech
C0037817 (UMLS CUI-1)
Item
Indicate the percent consonants
integer
C0439165 (UMLS CUI [1,1])
C0871699 (UMLS CUI [1,2])
C2349182 (UMLS CUI [1,3])
Percent consonants
Code List
Indicate the percent consonants
CL Item
5 years: Normal (-1 s.d.) (1)
C0205451 (UMLS CUI-1)
C0001779 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
5 years: Not normal (<-1 s.d. = <91%) (2)
C0205451 (UMLS CUI-1)
C0001779 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
CL Item
12 years: Normal (-1 s.d.) (3)
C0205458 (UMLS CUI-1)
C0001779 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
12 years: Not normal (<-1 s.d. = <95%) (4)
C0205458 (UMLS CUI-1)
C0001779 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
CL Item
22 years: Normal (-1 s.d.) (5)
C4284772 (UMLS CUI-1)
C0001779 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
22 years: Not normal (<-1 s.d. = <98%) (6)
C4284772 (UMLS CUI-1)
C0001779 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
Item Group
Appearance
C0700364 (UMLS CUI-1)
Phenotypic Assessment Tool questionnaire
Item
Phenotypic Assessment Tool questionnaire
text
C0031437 (UMLS CUI [1,1])
C1516048 (UMLS CUI [1,2])
C0376634 (UMLS CUI [1,3])
C0034394 (UMLS CUI [1,4])
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