Anglais

Follow-up (22 years) - Clinical Form

1 Formulaires  
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

Type de données

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.

Type de données

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Follow-up Clinical Status
Description

Follow-up Clinical Status

Alias
UMLS CUI-1
C0589120
UMLS CUI-2
C0205210
Indicate if the patient has any of the following comorbidities 0 = No other diseases
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C1298908
UMLS CUI [2,2]
C2359476
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C3277906
UMLS CUI [3,1]
C0232164
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0042066
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0042066
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0424605
UMLS CUI [3]
C0851265
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0004936
UMLS CUI [3]
C0004930
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0009450
UMLS CUI [3,1]
C0040549
UMLS CUI [3,2]
C0012634
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0521362
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0521362
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 7 = Musculoskeletal anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0026860
UMLS CUI [2,2]
C3887504
UMLS CUI [3,1]
C0026860
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0205394
UMLS CUI [2,2]
C0037303
UMLS CUI [2,3]
C0024947
UMLS CUI [2,4]
C1704258
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C2709248
UMLS CUI [2,2]
C1704258
UMLS CUI [3]
C1709770
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0279810
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0279810
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0205470
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0205470
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0027853
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0027853
UMLS CUI [3,2]
C3887504
Treatment
Description

Treatment

Alias
UMLS CUI-1
C0087111
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
Description

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Type de données

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C1518988
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
Description

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Type de données

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C4696991
Indicate if the patient has been transferred to your institution after care was begun elsewhere
Description

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Type de données

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0184681
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
Description

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Type de données

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0439787
Degree of health
Description

Degree of health

Alias
UMLS CUI-1
C0018759
Facial photographs: frontal repose, frontal smiling, both laterals, submental view
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical

Type de données

boolean

Alias
UMLS CUI [1,1]
C0700364
UMLS CUI [1,2]
C0015450
Indicate if the patient had an oronasal fistula requiring repair (that has been performed/is planned)
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1]
C1299894
Overjet Assessment
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1]
C0596028
Lateral Cephalogram
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 22 years REPORTING SOURCE: Clinical TYPE: Single answer

Type de données

boolean

Alias
UMLS CUI [1]
C0407698
Indicate the percent consonants
Description

SUPPORTING DEFINITION: Speech assessment material can be found at https://clispi.org/node/15 Definition of Normal/ Not Normal: 5 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <91%) 12 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <95%) 22 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <98%) INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Single Answer

Type de données

integer

Alias
UMLS CUI [1,1]
C0439165
UMLS CUI [1,2]
C0871699
UMLS CUI [1,3]
C2349182
Assess velopharyngeal competence
Description

SUPPORTING DEFINITION: Marginally incompetent: evidence of minor problems suggesting borderline closure Incompetent: evidence of significant problems usually requiring surgical management INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Single Answer

Type de données

integer

Alias
UMLS CUI [1]
C4027435
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Similar models

Follow-up (22 years) - Clinical Form

1 Formulaires
Name
Type
Description | Question | Decode (Coded Value)
Type de données
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
Follow-up Clinical Status
C0589120 (UMLS CUI-1)
C0205210 (UMLS CUI-2)
Comorbidities: No other diseases
Item
Indicate if the patient has any of the following comorbidities 0 = No other diseases
boolean
C0009488 (UMLS CUI [1])
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
Comorbidities: Cardiac anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C3277906 (UMLS CUI [2])
C0232164 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities: GU anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0042066 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Developmental delay or learning difficulty
Item
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
boolean
C0009488 (UMLS CUI [1])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
Comorbidities: Psychiatric or behavior disorder
Item
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
boolean
C0009488 (UMLS CUI [1])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
Comorbidities: Infection or toxin mediated disease
Item
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
boolean
C0009488 (UMLS CUI [1])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
Comorbidities: GI anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Musculoskeletal anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 7 = Musculoskeletal anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities: Other craniomaxillofacial anomalies
Item
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
boolean
C0009488 (UMLS CUI [1])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
Comorbidities: Pulmonary anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
Comorbidities: Hematological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Immunological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities: Neurological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
boolean
C0009488 (UMLS CUI [1])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Item Group
Treatment
C0087111 (UMLS CUI-1)
Item
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
integer
C1302313 (UMLS CUI [1,1])
C1518988 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
integer
C1302313 (UMLS CUI [1,1])
C4696991 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred to your institution after care was begun elsewhere
integer
C0030704 (UMLS CUI [1,1])
C0184681 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has been transferred to your institution after care was begun elsewhere
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
integer
C0030704 (UMLS CUI [1,1])
C0439787 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Degree of health
C0018759 (UMLS CUI-1)
Appearance
Item
Facial photographs: frontal repose, frontal smiling, both laterals, submental view
boolean
C0700364 (UMLS CUI [1,1])
C0015450 (UMLS CUI [1,2])
Item
Indicate if the patient had an oronasal fistula requiring repair (that has been performed/is planned)
integer
C1299894 (UMLS CUI [1])
Lost to follow-up (perioperative)
Code List
Indicate if the patient had an oronasal fistula requiring repair (that has been performed/is planned)
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Overjet Assessment
integer
C0596028 (UMLS CUI [1])
Syndrome/genetic diagnosis
Code List
Overjet Assessment
CL Item
Positive overjet (>3mm) (1)
C1446409 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205172 (UMLS CUI-3)
C0205449 (UMLS CUI-4)
C0439200 (UMLS CUI-5)
(Comment:en)
CL Item
Positive overjet (1-3mm) (2)
C1446409 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205103 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
C0205449 (UMLS CUI-5)
C0439200 (UMLS CUI-6)
(Comment:en)
CL Item
Edge to edge bite (3)
C1291058 (UMLS CUI-1)
(Comment:en)
CL Item
Negative overjet (1-3mm)  (4)
C0205160 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205103 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
C0205449 (UMLS CUI-5)
C0439200 (UMLS CUI-6)
(Comment:en)
CL Item
Negative overjet (>3mm) (5)
C0205160 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205172 (UMLS CUI-3)
C0205449 (UMLS CUI-4)
C0439200 (UMLS CUI-5)
(Comment:en)
Occlusion
Item
Lateral Cephalogram
boolean
C0407698 (UMLS CUI [1])
Item
Indicate the percent consonants
integer
C0439165 (UMLS CUI [1,1])
C0871699 (UMLS CUI [1,2])
C2349182 (UMLS CUI [1,3])
Percent consonants
Code List
Indicate the percent consonants
CL Item
Normal (1)
C0205307 (UMLS CUI-1)
(Comment:en)
CL Item
Not normal (2)
C1298908 (UMLS CUI-1)
C0205307 (UMLS CUI-2)
(Comment:en)
Item
Assess velopharyngeal competence
integer
C4027435 (UMLS CUI [1])
Question 1 of COHIP OSS
Code List
Assess velopharyngeal competence
CL Item
Marginally incompetent (1)
C2984078 (UMLS CUI-1)
C0231190 (UMLS CUI-2)
(Comment:en)
CL Item
Incompetent (2)
C0231190 (UMLS CUI-1)
(Comment:en)
CL Item
Competent (0)
C0086035 (UMLS CUI-1)
(Comment:en)
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