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Baseline - 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
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
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030551
UMLS CUI [1,2]
C0013658
Other
Description

Other

Alias
UMLS CUI-1
C0205394
Did you adopt your child?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0237459
From which country was your child was adopted from?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer RESPONSE OPTIONS: List of countries

Data type

text

Alias
UMLS CUI [1,1]
C0237459
UMLS CUI [1,2]
C0454664
At what age was your child adopted?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Numerical value of age in months

Data type

integer

Measurement units
  • months
Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C0237459
months
Is the language spoken at home different from the language spoken by the care team?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0442519
UMLS CUI [1,2]
C0023008
UMLS CUI [1,3]
C1705242
UMLS CUI [1,4]
C0086390
UMLS CUI [1,5]
C0023008
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Similar models

Baseline - 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])
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
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
integer
C0030551 (UMLS CUI [1,1])
C0013658 (UMLS CUI [1,2])
Parent education
Code List
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0013658 (UMLS CUI-1)
C0033145 (UMLS CUI-2)
(Comment:en)
CL Item
Secondary  (2)
C0557289 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Item Group
Other
C0205394 (UMLS CUI-1)
Item
Did you adopt your child?
integer
C0237459 (UMLS CUI [1])
Lost to follow-up (perioperative)
Code List
Did you adopt your child?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Country of adoption
Item
From which country was your child was adopted from?
text
C0237459 (UMLS CUI [1,1])
C0454664 (UMLS CUI [1,2])
Age of adoption
Item
At what age was your child adopted?
integer
C0001779 (UMLS CUI [1,1])
C0237459 (UMLS CUI [1,2])
Item
Is the language spoken at home different from the language spoken by the care team?
integer
C0442519 (UMLS CUI [1,1])
C0023008 (UMLS CUI [1,2])
C1705242 (UMLS CUI [1,3])
C0086390 (UMLS CUI [1,4])
C0023008 (UMLS CUI [1,5])
Lost to follow-up (perioperative)
Code List
Is the language spoken at home different from the language spoken by the care team?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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