English

Follow-up - Parent-reported

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
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
Degree of health
Description

Degree of health

Alias
UMLS CUI-1
C0018759
1. Do you understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0037824
UMLS CUI [2,2]
C0008059
2. Do immediate members of your family understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0086282
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
3. Do extended members of your family understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0231449
UMLS CUI [2,2]
C0086282
UMLS CUI [2,3]
C0037824
UMLS CUI [2,4]
C0008059
4. Do your child’s friends understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0079382
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
5. Do other acquaintances understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0337609
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
6. Do your child’s teachers understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0221457
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
7. Do strangers understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0871443
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
Has your child ever needed a hearing aid?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0018768
For how long?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Numerical value RESPONSE OPTION: Numerical value of duration in years

Data type

integer

Measurement units
  • Years
Alias
UMLS CUI [1,1]
C0018768
UMLS CUI [1,2]
C0449238
Years
How many times has your child had an ear infection (otitis media) in the last 12 months?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C3825879
UMLS CUI [1,2]
C4086728
Has your child required ear tubes (myringotomy and tympanostomy tube procedure – sometimes called a grommet) to improve hearing?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0743375
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Similar models

Follow-up - Parent-reported

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])
Time Relative to Baseline
Item
Time Relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Degree of health
C0018759 (UMLS CUI-1)
Item
1. Do you understand your child?
integer
C4273666 (UMLS CUI [1])
C0037824 (UMLS CUI [2,1])
C0008059 (UMLS CUI [2,2])
Question 1 of COHIP OSS
Code List
1. Do you understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
2. Do immediate members of your family understand your child?
integer
C4273666 (UMLS CUI [1])
C0086282 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
2. Do immediate members of your family understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
3. Do extended members of your family understand your child?
integer
C4273666 (UMLS CUI [1])
C0231449 (UMLS CUI [2,1])
C0086282 (UMLS CUI [2,2])
C0037824 (UMLS CUI [2,3])
C0008059 (UMLS CUI [2,4])
Question 1 of COHIP OSS
Code List
3. Do extended members of your family understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
4. Do your child’s friends understand your child?
integer
C4273666 (UMLS CUI [1])
C0079382 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
4. Do your child’s friends understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
5. Do other acquaintances understand your child?
integer
C4273666 (UMLS CUI [1])
C0337609 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
5. Do other acquaintances understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
6. Do your child’s teachers understand your child?
integer
C4273666 (UMLS CUI [1])
C0221457 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
6. Do your child’s teachers understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
7. Do strangers understand your child?
integer
C4273666 (UMLS CUI [1])
C0871443 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
7. Do strangers understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
Has your child ever needed a hearing aid?
integer
C0018768 (UMLS CUI [1])
Question 1 of COHIP OSS
Code List
Has your child ever needed a hearing aid?
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
Question 2 of Otologic health
Item
For how long?
integer
C0018768 (UMLS CUI [1,1])
C0449238 (UMLS CUI [1,2])
Question 3 of Otologic health
Item
How many times has your child had an ear infection (otitis media) in the last 12 months?
integer
C3825879 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Item
Has your child required ear tubes (myringotomy and tympanostomy tube procedure – sometimes called a grommet) to improve hearing?
integer
C0743375 (UMLS CUI [1])
Question 4 of Otologic health
Code List
Has your child required ear tubes (myringotomy and tympanostomy tube procedure – sometimes called a grommet) to improve hearing?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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