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Follow-up (5 + 12 years) - Clinical 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

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
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

Data type

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

Data type

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

Data type

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

Data type

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

Data type

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

Data type

integer

Alias
UMLS CUI [1]
C1299894
Indicate if the patient underwent an additional surgery for speech
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0035110
UMLS CUI [1,2]
C0037817
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

Data type

integer

Alias
UMLS CUI [1]
C0596028
Indicate the number of decayed deciduous (pediatric) teeth
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of decayed teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0226984
UMLS CUI [1,2]
C0018759
UMLS CUI [2,1]
C0429160
UMLS CUI [2,2]
C3266841
Indicate the number of mising deciduous (pediatric) teeth
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of missing teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0226984
UMLS CUI [1,2]
C0018759
UMLS CUI [2,1]
C0429158
UMLS CUI [2,2]
C3266841
Indicate the number of filled deciduous (pediatric) teeth
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of filled teeth

Data type

integer

Alias
UMLS CUI [1]
C0086103
Indicate the number of decayed/missing/filled permanent (adult) teeth
Description

SUPPORTING DEFINITION: Third molars included INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of decayed teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0086103
UMLS CUI [1,2]
C0026369
Indicate the number of decayed/missing/filled permanent (adult) teeth
Description

SUPPORTING DEFINITION: Third molars included INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of missing teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0086103
UMLS CUI [1,2]
C0026369
Indicate the number of decayed/missing/filled permanent (adult) teeth
Description

SUPPORTING DEFINITION: Third molars included INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Numerical value of filled teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0086103
UMLS CUI [1,2]
C0026369
Indicate the percent consonants
Description

SUPPORTING DEFINITION: Speech assessment material can be found at https://clispi.org/node/15 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0871699
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

Data type

integer

Alias
UMLS CUI [1]
C4027435
Indicate if the patient had treatment for an acquired cholesteatoma, ossicular chain disruption, and/or mastoiditis
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0038899
Indicate the puretone average measurement in the right ear
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C3526667
UMLS CUI [1,2]
C0229298
Indicate the puretone average measurement in the left ear
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C3526667
UMLS CUI [1,2]
C0229299
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Similar models

Follow-up (5 + 12 years) - Clinical 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
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
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
Indicate if the patient underwent an additional surgery for speech
integer
C0035110 (UMLS CUI [1,1])
C0037817 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient underwent an additional surgery for speech
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)
dmft: overall dental health: decayed
Item
Indicate the number of decayed deciduous (pediatric) teeth
integer
C0226984 (UMLS CUI [1,1])
C0018759 (UMLS CUI [1,2])
C0429160 (UMLS CUI [2,1])
C3266841 (UMLS CUI [2,2])
dmft: overall dental health: missing
Item
Indicate the number of mising deciduous (pediatric) teeth
integer
C0226984 (UMLS CUI [1,1])
C0018759 (UMLS CUI [1,2])
C0429158 (UMLS CUI [2,1])
C3266841 (UMLS CUI [2,2])
dmft: overall dental health: filled
Item
Indicate the number of filled deciduous (pediatric) teeth
integer
C0086103 (UMLS CUI [1])
DMFT: Overall dental health: Decayed
Item
Indicate the number of decayed/missing/filled permanent (adult) teeth
integer
C0086103 (UMLS CUI [1,1])
C0026369 (UMLS CUI [1,2])
DMFT: Overall dental health: Missing
Item
Indicate the number of decayed/missing/filled permanent (adult) teeth
integer
C0086103 (UMLS CUI [1,1])
C0026369 (UMLS CUI [1,2])
DMFT: Overall dental health: Filled
Item
Indicate the number of decayed/missing/filled permanent (adult) teeth
integer
C0086103 (UMLS CUI [1,1])
C0026369 (UMLS CUI [1,2])
Item
Indicate the percent consonants
integer
C0871699 (UMLS CUI [1])
Question 1 of COHIP OSS
Code List
Indicate the percent consonants
CL Item
5 years: Normal (-1 s.d.) (1)
C0205451 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
12 years: Normal (-1 s.d.) (3)
C0205458 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
22 years: Normal (-1 s.d.) (5)
C4284772 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
5 years: Not normal (<-1 s.d. = <91%) (2)
C0205451 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
CL Item
12 years: Not normal (<-1 s.d. = <95%)  (4)
C0205458 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
CL Item
22 years: Not normal (<-1 s.d. = <98%) (6)
C4284772 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(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)
Item
Indicate if the patient had treatment for an acquired cholesteatoma, ossicular chain disruption, and/or mastoiditis
integer
C0038899 (UMLS CUI [1])
Lost to follow-up (perioperative)
Code List
Indicate if the patient had treatment for an acquired cholesteatoma, ossicular chain disruption, and/or mastoiditis
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Puretone average in right ear
Item
Indicate the puretone average measurement in the right ear
integer
C3526667 (UMLS CUI [1,1])
C0229298 (UMLS CUI [1,2])
Puretone average in left ear
Item
Indicate the puretone average measurement in the left ear
integer
C3526667 (UMLS CUI [1,1])
C0229299 (UMLS CUI [1,2])
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