Grants We Funded

Abstract
While cleft lip and/or palate (CLP) is one of the most common and treatable birth defects in the United States (affecting approximately 1:700 infants born annually), and although guidelines for clinical care have been developed, little is known about the effectiveness and quality of cleft treatments that are rendered. Most of the scientific evidence is limited to single-institution case series and expert opinion. The CDC has formally acknowledged that there is a pressing need to understand the core issues affecting outcomes in the CLP population. However, before robust clinical data can be obtained, consensus must be reached regarding which outcomes should be formally assessed. There is a critical need for identification of these outcomes and for development of a standardized method by which to assess these outcomes. The American Cleft Palate-Craniofacial Association (ACPA) has officially concurred that "an agreed set of data standards is crucial" for both quality improvement endeavors and clinical research. In the absence of such knowledge, the development of strategies to improve care will likely remain problematic. Our long-term goal is to better understand clinically relevant outcomes in contemporary cleft care and to develop strategies for quality improvement. The purpose of this project is to develop a standardized framework that identifies which outcomes are important and specifies how they are best measured. Modeled after a recent, successful pilot project devoted to studying surgical outcomes, this project will convene three multidisciplinary expert panels specific to surgical, dental/orthodontic, and speech/audiologic outcomes. The standardized framework will define goals for each intervention and identify, classify, and prioritize clinical outcomes. The end result will constitute a set of shared objectives for cleft care, including a universal “language” for how to discuss them and a standardized method by which they should be appraised. This framework will be instrumental for all future outcomes research, comparative effectiveness research, quality improvement efforts, and development of policy.

Biography
Dr. Allori studied biochemistry and economics at Rice University and subsequently attended the University of Texas School of Public Health, where he obtained a master’s degree in public health with a concentration in management and policy studies. Dr. Allori earned a medical doctorate at the University of Texas Medical School at Houston, completed general surgery residency at Beth Israel Medical Center – New York, recently completed plastic surgery residency at Duke University Hospital, and is now a pediatric plastic and craniofacial surgical fellow at Harvard University–Children's Hospital Boston. With regard to research, Dr. Allori has trained at the M.D. Anderson Cancer Center's Laboratory for Reparative Biology and Bioengineering, and at the New York University Medical Center's Institute of Reconstructive Plastic Surgery. His 2013 PSF Pilot Research Grant utilizes a modified Delphi method and ontology-building processes to develop a standardized practical framework and set of data standards to guide the measurement of clinical outcomes in cleft care.