CLAP notational system

The CLAP notational system describes a standardized method for accurate and clinically significant phenotypic description of cleft lip/palate.

ICHOM standard set for 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 as “Prospective Data-collection System for the Comprehensive Appraisal of Cleft Care” (#NCT02702869). This project … Continue reading “CleftKit”

ICD-10-based expansion for cleft lip/palate

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.

Effect of Affordable Care Act on children’s surgical care

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.

Geospatial analysis of cleft care provision in North Carolina

This pilot project assessed risk factors for loss-to-followup for patients with cleft lip/palate in North Carolina.

Cross-sectional survey of cleft-care outcomes 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)