Priorities for public health research on craniosynostosis: Summary and recommendations from a Centers for Disease Control and Prevention‐sponsored meeting

Abstract

On June 8-9, 2006, the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention held a meeting entitled "Prioritizing a Public Health Research Agenda for Craniosynostosis". The meeting goals were to review current knowledge in the area, discuss research gaps, and identify future priorities for public health research. Participants with a broad range of expertise (including clinical and molecular genetics, cranial morphology, epidemiology, pediatrics, psychology, public health, and surgery) contributed to the development of the research agenda. Meeting participants were asked to consider public health significance and feasibility when identifying areas of priority for future public health research. Participants identified several priorities, including the need to better delineate the prevalence and phenotype of craniosynostosis (CS); to identify factors important in the causation of CS (including potentially modifiable environmental risk factors as well as genes involved in isolated CS and gene-gene and gene-environment interactions); and to better understand short- and long-term outcomes of CS (e.g., surgical, neurocognitive and neuropsychological outcomes, psychological adjustment, and social relationships) and issues related to clinical care that could affect those outcomes. The need for improved collaboration among clinical treatment centers and standardization of data collection to address these priorities was emphasized. These priorities will be used to guide future public health research on CS.