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Cleft Lip and Palate | Overview

Cleft Lip and Palate Research

Dr. Ingrid Ganske has made great strides in identifying the prevalence and characteristics of various forms of syndromic cleft lip and palate. By building on previous investigations and publications, she continues to study the genetic and environmental risk factors for cleft lip and palate, including CHARGE Syndrome and prenatal opioid exposure. With internal funding to support genetic sequencing, Dr. Ganske has also conducted a large review of cleft lip and palate patients with ectodermal dysplasia, identifying the most common genetic mutations and phenotypic presentations that occur in this patient population.

Cleft Lip and Palate Outcomes Research

Dr. Carolyn Rogers-Vizena leads the Boston Children's partnership with the International Consortium for Health Outcomes Measurement in addition to other major cleft centers to define and measure the benchmark patient outcomes. The long-term goal of this project is to set standardized achievement benchmarks for every institution caring for children with clefts. Dr. Rogers and the Consortium collect and routinely monitor this data as part of their clinical practice in order to identify areas for improvement.

In addition, Dr. Rogers-Vizena is the Boston Children's site PI for the CORNET speech study, a five-year multicenter NIH-funded project led by the University of Utah. The goal of this study is to better understand how variations in cleft palate repair surgical techniques impact speech outcome. There are numerous approaches for palate repair, but currently high-volume data does not exist to help surgeons decide on the best option for any given patient. With this study, the group hopes to answer that question and advance their ability to provide optimal surgical care to each patient.

Dr. John Meara is serving as the Principal Investigator on a project titled, “Optimal Outcome Reporting (OOR) in Cleft Palate Repair.” The primary goal of cleft palate repair is to establish adequate palatal and velar structure to enable production of normal speech. Studies across institutions vary significantly in inclusion criteria, clinical and research methods, successful speech metrics, and the burden of multiple procedures needed to achieve result. Our group created a novel conceptual quality metric called "OOR" (Optimal Outcome Reporting) to reflect the percentage of patients with cleft palate who experienced the best outcomes: one operation, velar competence, and no unintended palatal fistula. We are performing a retrospective analysis in a cohort of patients following primary palatoplasty by a single surgeon from 2007-2013 to assess cleft palate repair OOR by age five and eight years. This simple and understandable metric for assessing surgical outcomes can be tailored to individual surgeons and various cleft palate centers. A standardized outcome assessment will allow for benchmarking and serve as a basis for tracking quality improvement initiatives.