Our goals are to identify existing resources currently available and accessible to families of children affected by a craniofacial malformation (CFM), to develop informational and educational handbooks/materials for both parents and health care providers found to be lacking in pre-natal, birthing and post-natal facilities, to distribute these informational tools nationally, and to conduct several original research studies to assess the value of current treatment options. Our research studies for children born with craniofacial defects will investigate certain reconstructive procedures, evaluate current protocol for these procedures and establish guidelines for craniofacial teams nationwide. By educating new parents and health care providers who come in contact with this particular patient population and by determining those treatments that will lessen the need for secondary surgeries and improve results, this three-year project will improve services for affected children, and instruct parents, thus empowering them to provide better care for their children. Determining national standards of optimum treatment will clarify acceptable care provided by craniofacial centers and thus improve the chances of encouraging a national insurance policy that will ultimately reduce health care costs thus insuring better lives. In Year 1 we will identify existing resources for families of children affected by a craniofacial defect. Once the existing resources have been identified, we will be able to better identify resource gaps and make recommendations. We will create informational booklets for new mothers including a genetic primer for to encourage genetic testing to inform and educate parents and a booklet to foster self-esteem by providing age-specific recommendations. We will also develop training manuals for health care professionals who interact with new mothers of babies born with craniofacial malformations as well as materials on pre-natal counseling and nursing care and management of new mothers. Our research project will be a study to evaluate the long-term effects of nasoalveolar molding therapy on the growth of the midface. This longitudinal retrospective growth study will evaluate lateral cephalograms of over 200 cleft lip and palate patients and provide insight into the efficacy of the NAM. In Year 2 we will focus on designing, printing and disseminating the parent and health care provider materials created in Year 1. We will also update the NFFR website to include these new materials and to share this information with other websites including the March of Dimes and the American Cleft Lip and Palate Association. In research, we will conduct a study on the early correction of the mandibular hypoplasia and its affect on the inherent growth potential of the mandible. This study will clarify the optimum timing of this dramatic reconstructive procedure. In Year 3 we will disseminate and make available through the web materials and study findings in collaboration with the CDC and determine methods of teaching professionals the information gathered. We will submit our findings for publication to peer reviewed journals and present our findings at appropriate conferences and meetings. We will also conduct two important studies: (1), to identify strategies for optimal care by developing an instrument to determine or quantify facial aesthetic outcomes and establish validated measures of facial reconstructive outcomes in children, including the reduction of secondary surgeries with the use of NAM, and (2), conduct a study of resistance of the LeFort III (midface distraction) to achieve optimal positioning for highest quality results. This study will provide a more national standard for this procedure. ? ? ? ?
