Descrizione

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

Tipo di dati

integer

Alias

UMLS CUI [1]

C1269815

Descrizione

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.

Tipo di dati

text

Alias

UMLS CUI [1,1]

C0439564

UMLS CUI [1,2]

C1442488

Descrizione

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Appearance of the Face are not part of this version of the standard set. In the original standard set there are 9 questions of Cleft-Q Appearance of the Face. The ICHOM OID's are: CLEFTQFACE_Q01 to CLEFTQFACE_Q09 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 8, 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias

UMLS CUI [1,1]

C4321245

UMLS CUI [1,2]

C0008925

UMLS CUI [1,3]

C0034394

UMLS CUI [1,4]

C2964552

UMLS CUI [2,1]

C0700364

UMLS CUI [2,2]

C0015450

Descrizione

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Appearance of the Jaws are not part of this version of the standard set. In the original standard set there are 7 questions of Cleft-Q Appearance of the Jaws. The ICHOM OID's are: CLEFTQJAW_Q01 to CLEFTQJAW_Q07 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias

UMLS CUI [1,1]

C4321245

UMLS CUI [1,2]

C0008925

UMLS CUI [1,3]

C0034394

UMLS CUI [1,4]

C2964552

UMLS CUI [2,1]

C0700364

UMLS CUI [2,2]

C0022359

Descrizione

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Appearance of the Teeth are not part of this version of the standard set. In the original standard set there are 8 questions of Cleft-Q Appearance of the Teeth. The ICHOM OID's are: CLEFTQDENTAL_Q01 to CLEFTQDENTAL_Q08 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 8, 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias

UMLS CUI [1,1]

C4321245

UMLS CUI [1,2]

C0008925

UMLS CUI [1,3]

C0034394

UMLS CUI [1,4]

C2964552

UMLS CUI [2,1]

C0700364

UMLS CUI [2,2]

C0040426

Descrizione

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Social Function are not part of this version of the standard set. In the original standard set there are 10 questions of Cleft-Q Social Function. The ICHOM OID's are: CLEFTQSOCLIFE_Q01 to CLEFTQSOCLIFE_Q10 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 8, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias

UMLS CUI [1,1]

C4321245

UMLS CUI [1,2]

C0008925

UMLS CUI [1,3]

C0034394

UMLS CUI [1,4]

C2964552

UMLS CUI [2]

C0815198

Descrizione

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Eating and Drinking are not part of this version of the standard set. In the original standard set there are 9 questions of Cleft-Q Eating and Drinking. The ICHOM OID's are: CLEFTQED_Q01 to CLEFTQED_Q09 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 8, 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias

UMLS CUI [1,1]

C4321245

UMLS CUI [1,2]

C0008925

UMLS CUI [1,3]

C0034394

UMLS CUI [1,4]

C2964552

UMLS CUI [2,1]

C0013470

UMLS CUI [2,2]

C0684271

Descrizione

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Speech Distress are not part of this version of the standard set. In the original standard set there are 10 questions of Cleft-Q Speech Distress. The ICHOM OID's are: CLEFTQSPEAK_Q01 to CLEFTQSPEAK_Q10 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias

UMLS CUI [1,1]

C4321245

UMLS CUI [1,2]

C0008925

UMLS CUI [1,3]

C0034394

UMLS CUI [1,4]

C2964552

UMLS CUI [2]

C0037822

Descrizione

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Speech Function are not part of this version of the standard set. In the original standard set there are 12 questions of Cleft-Q Speech Function. The ICHOM OID's are: CLEFTQSPEECH_Q01 to CLEFTQSPEECH_Q12 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias

UMLS CUI [1,1]

C4321245

UMLS CUI [1,2]

C0008925

UMLS CUI [1,3]

C0034394

UMLS CUI [1,4]

C2964552

UMLS CUI [2,1]

C0037817

UMLS CUI [2,2]

C0542341