Patient characteristics
Supporting Definition: Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: All time points Reporting source: Clinician-reported Type: Numerical value Response option: Numerical value
integer
Family characteristics and community environment
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source:Administrative data Type: Single answer
integer
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Administrative data Type: Single answer
integer
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer
integer
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer
integer
Hearing
Only to fill in for 5 years old patients. Inclusion criteria: Patients with craniofacial microsomia Timing: 2,5 years Reporting Source: Clinician-reported Type: Single answer
integer
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer
integer
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12, 22 years Reporting Source: Clinician-reported Type: Numerical value; dB Response option: Free text
text
Speech
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 craniofacial microsomia TIMING: 5, 12, 22 years REPORTING SOURCE: Clinician-reported RESPONSE OPTIONS: Single Answer
integer
Oral health
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of decayed teeth
integer
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of missing teeth
integer
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of filled teeth
integer
Appearance
As a license agreement is needed for use of the PAT-CFM, the actual 13 (26) questions are not part of this version of the standard set. ICHOM OID's are: PATCFM_Q01 to PATCFM_Q13, each question is devided into an A and B version (e.g. PATCFM_Q01A, PATCFM_Q01B). Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 8 , 12, 22 years Reporting Source: Clinician-reported Type: Multiple answers
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