Allied Cleft & Craniofacial Quality-Improvement and Research Network (ACCQUIREnet)

Condition(s) studied

Investigational drug(s) / intervention(s)

Study summary

The Allied Cleft \& Craniofacial Quality-Improvement and Research Network (ACCQUIREnet) is a group of multidisciplinary cleft teams that have implemented a system for prospective collection of outcomes data, based on the ICHOM Standard Set for the Comprehensive Appraisal of Cleft Care, CLEFT-Q, and other outcomes instruments. Participating cleft teams may analyze clinical and psychosocial outcomes related to care of the child with cleft lip and/or palate (CL/P), compare its performance with those of other cleft centers, and identify opportunities for quality improvement.

Eligibility

Primary outcome measure(s)

• Speech: intelligibility — ~5 years of age
  Utilizes the intelligibility in context scale (ICS)
• Speech: intelligibility — ~8 years of age
  Utilizes the intelligibility in context scale (ICS)
• Speech: intelligibility — ~12 years of age
  Utilizes the intelligibility in context scale (ICS)
• Speech: intelligibility — ~22 years of age
  Utilizes the intelligibility in context scale (ICS)
• Speech: velopharyngeal competence — ~5 years of age
• Speech: velopharyngeal competence — ~8 years of age
• Speech: velopharyngeal competence — ~12 years of age
• Speech: velopharyngeal competence — ~22 years of age
• Speech: articulation — ~5 years of age
  Utilizes the modified percent correct consonants (mPCC) scale
• Speech: articulation — ~8 years of age
  Utilizes the modified percent correct consonants (mPCC) scale
• Speech: articulation — ~12 years of age
  Utilizes the modified percent correct consonants (mPCC) scale
• Speech: articulation — ~22 years of age
  Utilizes the modified percent correct consonants (mPCC) scale
• Speech: patient-reported outcomes related to speech and speaking — ~8 years of age
  Utilizes the CLEFT-Q PROM
• Speech: patient-reported outcomes related to speech and speaking — ~12 years of age
  Utilizes the CLEFT-Q PROM
• Speech: patient-reported outcomes related to speech and speaking — ~22 years of age
  Utilizes the CLEFT-Q PROM
• Hearing: puretone average — ~5 years of age
• Dental: dmft and DMFT scores — ~5 years of age
  Utilizes the dmft score for deciduous teeth and DMFT score for permanent teeth
• Dental: dmft and DMFT scores — ~12 years of age
  Utilizes the dmft score for deciduous teeth and DMFT score for permanent teeth
• Dental: dmft and DMFT scores — ~22 years of age
  Utilizes the dmft score for deciduous teeth and DMFT score for permanent teeth
• Dental: occlusion (Uses modifications of the GOSLON scale) — ~5 years of age
• Dental: occlusion (Uses modifications of the Bauru scale) — ~5 years of age
• Dental: occlusion (Uses modifications of the GOSLON scale) — ~12 years of age
• Dental: occlusion (Uses modifications of the Bauru scale) — ~12 years of age
• Dental: occlusion (Uses modifications of the GOSLON scale) — ~22 years of age
• Dental: occlusion (Uses modifications of the Bauru scale) — ~22 years of age
• Dental: patient-reported outcomes related to mastication — ~8 years of age
  Uses the CLEFT-Q PROM
• Dental: patient-reported outcomes related to mastication — ~12 years of age
  Uses the CLEFT-Q PROM
• Dental: patient-reported outcomes related to mastication — ~22 years of age
  Uses the CLEFT-Q PROM
• Dental: patient-reported outcomes related to oral health — ~8 years of age
  Uses the COHIP PROM
• Dental: patient-reported outcomes related to oral health — ~12 years of age
  Uses the COHIP PROM
• Dental: patient-reported outcomes related to oral health — ~22 years of age
  Uses the COHIP PROM
• Patient-reported outcomes related to eating/drinking — ~8 years of age
  Uses the CLEFT-Q PROM
• Patient-reported outcomes related to eating/drinking — ~12 years of age
  Uses the CLEFT-Q PROM
• Patient-reported outcomes related to eating/drinking — ~22 years of age
  Uses the CLEFT-Q PROM
• Breathing: Patient-reported outcomes related to nasal and oral breathing — ~8 years of age
  Uses the NOSE PROM
• Breathing: Patient-reported outcomes related to nasal and oral breathing — ~12 years of age
  Uses the NOSE PROM
• Breathing: Patient-reported outcomes related to nasal and oral breathing — ~22 years of age
  Uses the NOSE PROM
• Aesthetics: Patient-reported outcomes related to appearance — ~8 years of age
  Uses the CLEFT-Q PROM
• Aesthetics: Patient-reported outcomes related to appearance — ~12 years of age
  Uses the CLEFT-Q PROM
• Aesthetics: Patient-reported outcomes related to appearance — ~22 years of age
  Uses the CLEFT-Q PROM
• Aesthetics: Clinical assessment of nasolabial and facial aesthetics — ~2 years of age
• Aesthetics: Clinical assessment of nasolabial and facial aesthetics — ~5 years of age
• Aesthetics: Clinical assessment of nasolabial and facial aesthetics — ~8 years of age
• Aesthetics: Clinical assessment of nasolabial and facial aesthetics — ~12 years of age
• Aesthetics: Clinical assessment of nasolabial and facial aesthetics — ~22 years of age

Trial sites (11)

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