The CLAP notational system describes a standardized method for accurate and clinically significant phenotypic description of cleft lip/palate.
The ICHOM standard set describes a core set of outcome measures intended for the comprehensive appraisal of cleft care.
Patients treated by the Duke Cleft & Craniofacial Center are being actively recruited for participation in the CleftKit project in order to look at long-term, comprehensive, and holistic outcomes associated with cleft care. The CleftKit project is officially listed in ClinicalTrials.gov as “Prospective Data-collection System for the Comprehensive Appraisal of Cleft Care” (#NCT02702869). This project … Continue reading “CleftKit”
This project describes an expanded codeset based on (and compatible with) the ICD-10-CM codes for cleft lip/palate. Whereas ICD-10-CM lacks sufficient phenotypic detail to be useful for research and epidemiological surveillance, the expanded codeset allows for a 1:1 relationship of code to classification.
This pilot project uses statewide databases to investigate the effect of Medicaid expansion (one of the provisions of the Patient Protection and Affordable Care Act, or PPACA) on provision and utilization of children’s surgical services.
This pilot project assessed risk factors for loss-to-followup for patients with cleft lip/palate in North Carolina.
The North Carolina Cleft Outcomes Study was a survey-based, cross-sectional investigation of cleft-care provision and long-term outcomes for adolescent children with cleft lip/palate born in North Carolina.
ACCQUIREnet (Allied Cleft & Craniofacial Quality-Improvement & Research Network)