Lancaster Cleft Palate Clinic supports and has been involved with clinical research over the years in order to further treatment, research, and education. The research is not only for internal use, but also to share with patients, their families, and providers.
Outcome data is a valuable aspect of LCPC’s research. Not only do we use the data in house, but we also share it – protecting patient information – with other medical or dental programs. LCPC has been the source of data for almost 40 research studies of residents meeting research requirements there. Outcome data helps LCPC adjust and improve our treatment, and compare the results from various approaches.
For our entire 80-year legacy, our local team has substantially contributed to the international treatment of clefts. From the 1960s to the early ’80s, a federal grant funded LCPC’s study about long-term cleft treatment effects, such as speech development, social adaptations, hearing, and more. The data is still here in our archives, and it represents the largest repository of longitudinal data on treatment effects in children anywhere in the country. This data still informs treatment decisions and impacts what we, and other practitioners nationwide, do daily.
Following a push from the World Health Organization, the grandest impact is coming from a project we’re leading called Americleft: a collaboration of specialists identifying the best treatments and management strategies. It has expanded to include a speech group, psycho-social group, a surgical group, and a pediatric/medical/dental group. We started with six members, but now we’re more than thirty. Soon, we’re launching a five-year project to build a complete electronic data registry of outcomes.
Lancaster Cleft Palate Clinic is pleased to be a leader involved in a new initiative: Craniofacial Outcomes Research Network (CORNET). This groundbreaking study will compare treatment options for children undergoing palate surgery at approximately one year and follow the results of their speech patterns for the next four years. CORNET is funded by the National Institute for Health (NIH) and has created a data registry for patient cases that will allow study to compare the results of various surgical and speech techniques.
Eighteen centers will participate in CORNET, including the five who have already begun. The participating groups have all agreed to standardize their records to enhance their comparative value. The benefit of CORNET is that it will yield practice-based evidence for speech and surgical procedures and protocols. The data registry will be stored for future generations. Dr. Rusty Long notes that participants look forward to learning from each other, and he believes that that with successful comparison for these speech and surgical outcomes, CORNET can be expanded to include other areas of craniofacial treatment research.