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On referral - Parent-reported Form

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

text

Alias
UMLS CUI [1]
C1269815
Patient Demographic Factors
Description

Patient Demographic Factors

Alias
UMLS CUI-1
C1704791
Indicate the patient's date of birth
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0421451
DD/MM/YYYY
Indicate the patient’s sex at birth
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is the Patient's ethnicity?
Description

Note: In the original version of the standard set is not supplemented because it varies by country and should be determined by country (not for cross-country comparison) Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1]
C0034510
Indicate the recorded weight at birth
Description

Supporting Definition: Grams Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

float

Measurement units
  • g
Alias
UMLS CUI [1]
C0005612
g
Indicate the length of gestation in completed weeks
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

integer

Measurement units
  • weeks
Alias
UMLS CUI [1]
C0460089
weeks
Indicate the patient's age at first encounter with team
Description

Supporting Definition: Recorded in months at 24 months and younger. Recorded in years if older than 24 months Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C1514821
Unit of Age
Description

This Item does not exist in the original verison of the standard set. It can be filled in additionally to the item "FIRSTENC". Supporting Definition: Recorded in months at 24 months and younger. Recorded in years if older than 24 months Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1519795
UMLS CUI [1,2]
C0001779
Indicate the results of the karyotype (if available)
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C1261273
UMLS CUI [1,2]
C0021270
Family Demographic Factors
Description

Family Demographic Factors

Alias
UMLS CUI-1
C1704791
UMLS CUI-2
C0015576
Patient siblings with upper limb congenital malformations
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0037047
UMLS CUI [1,2]
C0749794
Indicate whether the patient is a twin
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0032989
UMLS CUI [2]
C0152150
Indicate the number of children with CULA from the same pregnancy
Description

Inclusion Criteria: If "1 = Yes" to MULTPREG Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0449788
UMLS CUI [1,2]
C0302142
UMLS CUI [1,3]
C0032989
Indicate the mother's date of birth
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C2599455
UMLS CUI [1,2]
C0026591
DD/MM/YYYY
Indicate whether the patient was conceived through assisted fertilisation
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0521305
Indicate what type of fertilisation the patient was conceived through
Description

Inclusion Criteria: If "1 = Yes" to ASSFERT Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0521305
UMLS CUI [1,2]
C0332307
Indicate whether the mother is blood-related to the father (1st/2nd degree)
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0009789
Indicate whether the mother was diagnosed with diabetes before pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1858460
UMLS CUI [1,2]
C0011849
UMLS CUI [1,3]
C0332152
UMLS CUI [1,4]
C0032961
Indicate whether the mother took medication in the first trimester of pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0032979
UMLS CUI [1,2]
C0013227
Indicate what type of medication was taken during the first trimester of pregnancy
Description

Inclusion Criteria: If "1 = Yes" to FIRSTTRIMMED Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0032979
UMLS CUI [1,2]
C0013227
UMLS CUI [1,3]
C0332307
Indicate whether alcohol was consumed during the first trimester of pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0001948
UMLS CUI [1,2]
C0032979
Indicate whether recreational drugs were consumed during the first trimester of pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0678263
UMLS CUI [1,2]
C0032979
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Similar models

On referral - Parent-reported Form

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
text
C1269815 (UMLS CUI [1])
Item Group
Patient Demographic Factors
C1704791 (UMLS CUI-1)
Child Date of Birth
Item
Indicate the patient's date of birth
date
C0421451 (UMLS CUI [1])
Item
Indicate the patient’s sex at birth
integer
C0079399 (UMLS CUI [1])
Sex at birth
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 ethnicity?
text
C0034510 (UMLS CUI [1])
Weight at birth
Item
Indicate the recorded weight at birth
float
C0005612 (UMLS CUI [1])
Length of gestation
Item
Indicate the length of gestation in completed weeks
integer
C0460089 (UMLS CUI [1])
Age at first encounter with team
Item
Indicate the patient's age at first encounter with team
integer
C0001779 (UMLS CUI [1,1])
C1514821 (UMLS CUI [1,2])
Item
Unit of Age
integer
C1519795 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
Unit of Age
Code List
Unit of Age
CL Item
Month (1)
C0439231 (UMLS CUI-1)
(Comment:en)
CL Item
Year (2)
C0439234 (UMLS CUI-1)
(Comment:en)
Karyotype of infant/foetus
Item
Indicate the results of the karyotype (if available)
text
C1261273 (UMLS CUI [1,1])
C0021270 (UMLS CUI [1,2])
Item Group
Family Demographic Factors
C1704791 (UMLS CUI-1)
C0015576 (UMLS CUI-2)
Item
Patient siblings with upper limb congenital malformations
integer
C0037047 (UMLS CUI [1,1])
C0749794 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Patient siblings with upper limb congenital malformations
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether the patient is a twin
integer
C0032989 (UMLS CUI [1])
C0152150 (UMLS CUI [2])
Siblings with Anomalies
Code List
Indicate whether the patient is a twin
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Number of Malformed in Multiple Pregnancy
Item
Indicate the number of children with CULA from the same pregnancy
integer
C0449788 (UMLS CUI [1,1])
C0302142 (UMLS CUI [1,2])
C0032989 (UMLS CUI [1,3])
Mother's date of birth
Item
Indicate the mother's date of birth
date
C2599455 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
Item
Indicate whether the patient was conceived through assisted fertilisation
integer
C0521305 (UMLS CUI [1])
Siblings with Anomalies
Code List
Indicate whether the patient was conceived through assisted fertilisation
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate what type of fertilisation the patient was conceived through
text
C0521305 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate what type of fertilisation the patient was conceived through
Item
Indicate whether the mother is blood-related to the father (1st/2nd degree)
integer
C0009789 (UMLS CUI [1])
Siblings with Anomalies
Code List
Indicate whether the mother is blood-related to the father (1st/2nd degree)
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether the mother was diagnosed with diabetes before pregnancy
integer
C1858460 (UMLS CUI [1,1])
C0011849 (UMLS CUI [1,2])
C0332152 (UMLS CUI [1,3])
C0032961 (UMLS CUI [1,4])
Siblings with Anomalies
Code List
Indicate whether the mother was diagnosed with diabetes before pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether the mother took medication in the first trimester of pregnancy
integer
C0032979 (UMLS CUI [1,1])
C0013227 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate whether the mother took medication in the first trimester of pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Type of medication taken in first timester
Item
Indicate what type of medication was taken during the first trimester of pregnancy
text
C0032979 (UMLS CUI [1,1])
C0013227 (UMLS CUI [1,2])
C0332307 (UMLS CUI [1,3])
Item
Indicate whether alcohol was consumed during the first trimester of pregnancy
integer
C0001948 (UMLS CUI [1,1])
C0032979 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate whether alcohol was consumed during the first trimester of pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether recreational drugs were consumed during the first trimester of pregnancy
integer
C0678263 (UMLS CUI [1,1])
C0032979 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate whether recreational drugs were consumed during the first trimester of pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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