Patient ID
Item
Indicate the patient's medical record number
text
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
Indicate whether the patient has any comorbidities
integer
C0009488 (UMLS CUI [1])
Code List
Indicate whether the patient has any comorbidities
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Comorbidities of paediatric patient: No other disease
Item
Indicate if the patient has any of the following comorbidities 0 = No other diseases
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
Comorbidities of paediatric patient: Cardiac anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C3277906 (UMLS CUI [2])
C0018787 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GU anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0042066 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Developmental delay or learning difficulty
Item
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
Comorbidities of paediatric patient: Psychiatric or behavior disorder
Item
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
Comorbidities of paediatric patient: Infection or toxin mediated disease
Item
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GI anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other musculoskeletal anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 7 = Other musculoskeletal anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other craniomaxillofacial anomalies
Item
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
Comorbidities of paediatric patient: Pulmonary anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
Comorbidities of paediatric patient: Hematological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Immunological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Neurological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Number of hospital appointments
Item
Number of appointments with the clinical team (e.g. hospital, rehabilitation) for management of CULA
integer
C0237753 (UMLS CUI [1,1])
C0586344 (UMLS CUI [1,2])
C0749794 (UMLS CUI [1,3])
Length of hospital stay
Item
Time spent in hospital from date of admission to date of discharge (days)
integer
C0019994 (UMLS CUI [1,1])
C0023303 (UMLS CUI [1,2])
Length of post-operative rehabilitation
Item
Length of postoperative rehabilitation from date of surgery to date of discharge (days)
integer
C1444754 (UMLS CUI [1,1])
C0034991 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0032790 (UMLS CUI [1,4])
Hospital readmissions
Item
Number of unplanned 30-day hospital readmissions after the first reconstructive surgery for CULA
integer
C0600290 (UMLS CUI [1,1])
C3854240 (UMLS CUI [1,2])
Item
Indicate which side the malformation is
integer
C3166323 (UMLS CUI [1,1])
C0302142 (UMLS CUI [1,2])
Code List
Indicate which side the malformation is
CL Item
Left (1)
C0205091 (UMLS CUI-1)
(Comment:en)
CL Item
Right (2)
C0205090 (UMLS CUI-1)
(Comment:en)
CL Item
Both (3)
C1706086 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the pincer grasp on the left side
integer
C0517085 (UMLS CUI [1,1])
C0205091 (UMLS CUI [1,2])
Code List
The child is able to use the pincer grasp on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the pincer grasp on the right side
integer
C0517085 (UMLS CUI [1,1])
C0205090 (UMLS CUI [1,2])
Code List
The child is able to use the pincer grasp on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the lateral pincer grasp on the left side
integer
C0205093 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205091 (UMLS CUI [1,3])
Code List
The child is able to use the lateral pincer grasp on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the lateral pincer grasp on the right side
integer
C0205093 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205090 (UMLS CUI [1,3])
Code List
The child is able to use the lateral pincer grasp on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the tripod pinch on the left side
integer
C0085732 (UMLS CUI [1,1])
C1524063 (UMLS CUI [1,2])
C0556963 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
Code List
The child is able to use the tripod pinch on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the tripod pinch on the right side
integer
C0085732 (UMLS CUI [1,1])
C1524063 (UMLS CUI [1,2])
C0556963 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
Code List
The child is able to use the tripod pinch on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to open their hand completely on the left side
integer
C0562172 (UMLS CUI [1,1])
C0205197 (UMLS CUI [1,2])
C0175566 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
Code List
The child is able to open their hand completely on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to open their hand completely on the right side
integer
C0562172 (UMLS CUI [1,1])
C0205197 (UMLS CUI [1,2])
C0175566 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
Code List
The child is able to open their hand completely on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to make a full fist on the left side
integer
C0562119 (UMLS CUI [1,1])
C0205091 (UMLS CUI [1,2])
Code List
The child is able to make a full fist on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to make a full fist on the right side
integer
C0562119 (UMLS CUI [1,1])
C0205090 (UMLS CUI [1,2])
Code List
The child is able to make a full fist on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the left side
integer
C4055539 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205091 (UMLS CUI [1,3])
Code List
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the right side
integer
C4055539 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205090 (UMLS CUI [1,3])
Code List
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with one hand on the left side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0205171 (UMLS CUI [1,3])
C0018563 (UMLS CUI [1,4])
C0205091 (UMLS CUI [1,5])
Code List
The child is able to pick up a small toy with one hand on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with one hand on the right side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0205171 (UMLS CUI [1,3])
C0018563 (UMLS CUI [1,4])
C0205090 (UMLS CUI [1,5])
Code List
The child is able to pick up a small toy with one hand on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with the tips of their thumb and fingers on the left side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0517085 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
Code List
The child is able to pick up a small toy with the tips of their thumb and fingers on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with the tips of their thumb and fingers on the right side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0517085 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
Code List
The child is able to pick up a small toy with the tips of their thumb and fingers on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Joint range of motion
Item
Indicate the degrees achieved
text
C0080078 (UMLS CUI [1])