Inglese

Follow-up 8 years - Patient-reported

1 moduli  
Administrative Data
Descrizione

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
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
Time Relative to Baseline
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
CLEFTQ
Descrizione

CLEFTQ

Alias
UMLS CUI-1
C4321245
UMLS CUI-2
C0008925
UMLS CUI-3
C0034394
Cleft-Q Appearance of the Face, total score
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
Cleft-Q Appearance of the Teeth, total score
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
Cleft-Q Social Function, total score
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
Cleft-Q Eating and Drinking, total score
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
NOSE
Descrizione

NOSE

Alias
UMLS CUI-1
C0027429
UMLS CUI-2
C0681889
Over the past 1 month, how much of a problem were the following conditions for you? 1: Nasal congestion or stuffiness
Descrizione

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 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0027429
UMLS CUI [1,2]
C0681889
UMLS CUI [2]
C0027424
2: Nasal blockage or obstruction
Descrizione

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 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0027429
UMLS CUI [1,2]
C0681889
UMLS CUI [2]
C0027429
3: Trouble breathing through my nose
Descrizione

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 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0027429
UMLS CUI [1,2]
C0681889
UMLS CUI [2,1]
C3641913
UMLS CUI [2,2]
C0028429
4: Trouble sleeping
Descrizione

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 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0027429
UMLS CUI [1,2]
C0681889
UMLS CUI [2]
C3843960
5: Unable to get enough air through my nose during exercise or exertion
Descrizione

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 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0027429
UMLS CUI [1,2]
C0681889
UMLS CUI [2,1]
C0231180
UMLS CUI [2,2]
C3536832
UMLS CUI [2,3]
C0028429
UMLS CUI [2,4]
C0015259
UMLS CUI [3,1]
C0231180
UMLS CUI [3,2]
C3536832
UMLS CUI [3,3]
C0028429
UMLS CUI [3,4]
C0015264
COHIP
Descrizione

COHIP

Alias
UMLS CUI-1
C0034394
UMLS CUI-2
C2013427
UMLS CUI-3
C0681889
Choose the answer the best describes you in the past 3 months regarding your teeth, mouth, or face. 1. Have you had pain in your teeth (toothache)?
Descrizione

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 8, 12 years REPORTING SOURCE: Patient-reported RESPONSE OPTIONS: Single Answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0034394
UMLS CUI [1,2]
C2013427
UMLS CUI [1,3]
C0681889
UMLS CUI [2]
C0040460
2. Have you had discolored teeth or spots on your teeth?
Descrizione

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 8, 12 years REPORTING SOURCE: Patient-reported RESPONSE OPTIONS: Single Answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0034394
UMLS CUI [1,2]
C2013427
UMLS CUI [1,3]
C0681889
UMLS CUI [2]
C0040434
3. Have you had crooked teeth or spaces between your teeth?
Descrizione

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 8, 12 years REPORTING SOURCE: Patient-reported RESPONSE OPTIONS: Single Answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0034394
UMLS CUI [1,2]
C2013427
UMLS CUI [1,3]
C0681889
UMLS CUI [2]
C1852504
4. Have you had bad breath?
Descrizione

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 8, 12 years REPORTING SOURCE: Patient-reported RESPONSE OPTIONS: Single Answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0034394
UMLS CUI [1,2]
C2013427
UMLS CUI [1,3]
C0681889
UMLS CUI [2]
C0018520
5. Have you had bleeding gums?
Descrizione

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 8, 12 years REPORTING SOURCE: Patient-reported RESPONSE OPTIONS: Single Answer

Tipo di dati

integer

Alias
UMLS CUI [1,1]
C0034394
UMLS CUI [1,2]
C2013427
UMLS CUI [1,3]
C0681889
UMLS CUI [2]
C0017565
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Similar models

Follow-up 8 years - Patient-reported

1 moduli
Name
genere
Description | Question | Decode (Coded Value)
Tipo di dati
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
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
CLEFTQ
C4321245 (UMLS CUI-1)
C0008925 (UMLS CUI-2)
C0034394 (UMLS CUI-3)
Cleft-Q Appearance of the Face, total score
Item
Cleft-Q Appearance of the Face, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0700364 (UMLS CUI [2,1])
C0015450 (UMLS CUI [2,2])
Cleft-Q Appearance of the Teeth, total score
Item
Cleft-Q Appearance of the Teeth, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0700364 (UMLS CUI [2,1])
C0040426 (UMLS CUI [2,2])
Cleft-Q Social Function, total score
Item
Cleft-Q Social Function, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0815198 (UMLS CUI [2])
Cleft-Q Eating and Drinking, total score
Item
Cleft-Q Eating and Drinking, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0013470 (UMLS CUI [2,1])
C0684271 (UMLS CUI [2,2])
Item Group
NOSE
C0027429 (UMLS CUI-1)
C0681889 (UMLS CUI-2)
Item
Over the past 1 month, how much of a problem were the following conditions for you? 1: Nasal congestion or stuffiness
integer
C0027429 (UMLS CUI [1,1])
C0681889 (UMLS CUI [1,2])
C0027424 (UMLS CUI [2])
Question 1 of NOSE
Code List
Over the past 1 month, how much of a problem were the following conditions for you? 1: Nasal congestion or stuffiness
CL Item
Not a problem (0)
C0549184 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Very mild problem  (1)
C4036115 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Moderate problem  (2)
C0205081 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Fairly bad problem  (3)
C2986941 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Severe problem (4)
C0205082 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
Item
2: Nasal blockage or obstruction
integer
C0027429 (UMLS CUI [1,1])
C0681889 (UMLS CUI [1,2])
C0027429 (UMLS CUI [2])
Question 1 of NOSE
Code List
2: Nasal blockage or obstruction
CL Item
Not a problem (0)
C0549184 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Very mild problem  (1)
C4036115 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Moderate problem  (2)
C0205081 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Fairly bad problem  (3)
C2986941 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Severe problem (4)
C0205082 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
Item
3: Trouble breathing through my nose
integer
C0027429 (UMLS CUI [1,1])
C0681889 (UMLS CUI [1,2])
C3641913 (UMLS CUI [2,1])
C0028429 (UMLS CUI [2,2])
Question 1 of NOSE
Code List
3: Trouble breathing through my nose
CL Item
Not a problem (0)
C0549184 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Very mild problem  (1)
C4036115 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Moderate problem  (2)
C0205081 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Fairly bad problem  (3)
C2986941 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Severe problem (4)
C0205082 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
Item
4: Trouble sleeping
integer
C0027429 (UMLS CUI [1,1])
C0681889 (UMLS CUI [1,2])
C3843960 (UMLS CUI [2])
Question 1 of NOSE
Code List
4: Trouble sleeping
CL Item
Not a problem (0)
C0549184 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Very mild problem  (1)
C4036115 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Moderate problem  (2)
C0205081 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Fairly bad problem  (3)
C2986941 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Severe problem (4)
C0205082 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
Item
5: Unable to get enough air through my nose during exercise or exertion
integer
C0027429 (UMLS CUI [1,1])
C0681889 (UMLS CUI [1,2])
C0231180 (UMLS CUI [2,1])
C3536832 (UMLS CUI [2,2])
C0028429 (UMLS CUI [2,3])
C0015259 (UMLS CUI [2,4])
C0231180 (UMLS CUI [3,1])
C3536832 (UMLS CUI [3,2])
C0028429 (UMLS CUI [3,3])
C0015264 (UMLS CUI [3,4])
Question 1 of NOSE
Code List
5: Unable to get enough air through my nose during exercise or exertion
CL Item
Not a problem (0)
C0549184 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Very mild problem  (1)
C4036115 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Moderate problem  (2)
C0205081 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Fairly bad problem  (3)
C2986941 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
CL Item
Severe problem (4)
C0205082 (UMLS CUI-1)
C0033213 (UMLS CUI-2)
(Comment:en)
Item Group
COHIP
C0034394 (UMLS CUI-1)
C2013427 (UMLS CUI-2)
C0681889 (UMLS CUI-3)
Item
Choose the answer the best describes you in the past 3 months regarding your teeth, mouth, or face. 1. Have you had pain in your teeth (toothache)?
integer
C0034394 (UMLS CUI [1,1])
C2013427 (UMLS CUI [1,2])
C0681889 (UMLS CUI [1,3])
C0040460 (UMLS CUI [2])
Question 1 of COHIP OSS
Code List
Choose the answer the best describes you in the past 3 months regarding your teeth, mouth, or face. 1. Have you had pain in your teeth (toothache)?
CL Item
Never  (0)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Almost never (1)
C2986940 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (2)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Fairly often (3)
C2986941 (UMLS CUI-1)
(Comment:en)
CL Item
Almost all of the time (4)
C3844113 (UMLS CUI-1)
(Comment:en)
Item
2. Have you had discolored teeth or spots on your teeth?
integer
C0034394 (UMLS CUI [1,1])
C2013427 (UMLS CUI [1,2])
C0681889 (UMLS CUI [1,3])
C0040434 (UMLS CUI [2])
Question 1 of COHIP OSS
Code List
2. Have you had discolored teeth or spots on your teeth?
CL Item
Never  (0)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Almost never (1)
C2986940 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (2)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Fairly often (3)
C2986941 (UMLS CUI-1)
(Comment:en)
CL Item
Almost all of the time (4)
C3844113 (UMLS CUI-1)
(Comment:en)
Item
3. Have you had crooked teeth or spaces between your teeth?
integer
C0034394 (UMLS CUI [1,1])
C2013427 (UMLS CUI [1,2])
C0681889 (UMLS CUI [1,3])
C1852504 (UMLS CUI [2])
Question 1 of COHIP OSS
Code List
3. Have you had crooked teeth or spaces between your teeth?
CL Item
Never  (0)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Almost never (1)
C2986940 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (2)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Fairly often (3)
C2986941 (UMLS CUI-1)
(Comment:en)
CL Item
Almost all of the time (4)
C3844113 (UMLS CUI-1)
(Comment:en)
Item
4. Have you had bad breath?
integer
C0034394 (UMLS CUI [1,1])
C2013427 (UMLS CUI [1,2])
C0681889 (UMLS CUI [1,3])
C0018520 (UMLS CUI [2])
Question 1 of COHIP OSS
Code List
4. Have you had bad breath?
CL Item
Never  (0)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Almost never (1)
C2986940 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (2)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Fairly often (3)
C2986941 (UMLS CUI-1)
(Comment:en)
CL Item
Almost all of the time (4)
C3844113 (UMLS CUI-1)
(Comment:en)
Item
5. Have you had bleeding gums?
integer
C0034394 (UMLS CUI [1,1])
C2013427 (UMLS CUI [1,2])
C0681889 (UMLS CUI [1,3])
C0017565 (UMLS CUI [2])
Question 1 of COHIP OSS
Code List
5. Have you had bleeding gums?
CL Item
Never  (0)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Almost never (1)
C2986940 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (2)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Fairly often (3)
C2986941 (UMLS CUI-1)
(Comment:en)
CL Item
Almost all of the time (4)
C3844113 (UMLS CUI-1)
(Comment:en)
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