Cleft Lip and Palate Research

Since 1998, the PPC has been involved in a series of studies looking at children with oral clefts and related conditions. This research includes outcomes of care and health and well-being for children with oral clefts, primary care physician knowledge of and experience with this population, and health-related quality of life for children and adolescents with oral clefts.

In the United States, clefts occur in 1 of 700-1,000 births, making it one of the most common major birth defects. Oral clefts occur more often in children of Asian, Latino, or Native American descent. Children with a cleft lip or palate tend to be at higher risk for colds, hearing loss, speech defects, and dental problems including missing, extra, malformed, or displaced teeth, and cavities.

Researchers at the PPC have worked with colleagues from New York and Arkansas in a series of studies funded by the National Foundation for Facial Reconstruction and the CDC comparing children from different backgrounds with oral clefts. Research methods are constantly being modified to reflect the most effective measurement instruments.

The PBS-30 (child functioning), the PedsQL (Health-related Quality of Life) and the CAHPS survey (care delivery assessment) are just a few examples of measurement tools used in these studies. Those who might be interested in this research include clinicians working with children with oral clefts by performing surgery or providing therapy, and researchers wanting to couple genetics with outcomes or interested in the long-term outcome of team care.