In addition to our clinical work, the Lancaster Cleft Palate Clinic is also a leader in international research efforts to improve cleft care for patients around the globe. Through systemic record collection and review since its founding in 1938, the Lancaster Cleft Palate Clinic has established itself as the largest repository for data on facial and dental growth and development in patients with clefts and craniofacial anomalies in the world today. These data are continually analyzed and the information we learn from them about the necessary procedures for successful outcomes is shared with our colleagues both in the U.S. and abroad.
The Americleft Project is an international, multi-system study that aims to provide standard measurements to evaluate the outcomes of treatment provided to children with clefts. Outcomes are then evaluated blindly by various specialty groups to assess the success of treatment. This will allow different centers the ability to compare their protocols for cleft treatment to those of other centers. Since most major centers have different treatment protocols, this will provide a universal way to evaluate what works best for patient outcomes. The goal is to gather information to better burden of care, and number of surgeries patients endure.
We are the lead research facility for the Americleft Project, endorsed by the American Cleft Palate-Craniofacial Association. We have presented our Americleft findings to audiences in Japan, Austria, Spain, Greece, Turkey, Australia, the UK, Brazil, and South Africa, and there are now similar projects under way in Europe (Eurocleft), Japan (Japancleft), India (Indiacleft), Africa (Africleft), and Turkey (Turkcleft).
We are one of six centers participating in the Quality of Life in Children with Cleft study, which is funded by the NIH. The aim of the study is to better understand how cleft care is related to quality of life, self esteem, and overall well being. Children between the ages of 7 and 18 and their parents are asked to fill out a questionnaire, as do their treating doctors and teachers. These questions are filled out a total of three times in hopes that the information gathered will give us a better understanding of life as a child with a cleft and therefore help teams support patients more effectively.