The necessity of establishment of Craniofacial Anomalies Registry in Iran

Craniofacial anomalies include clefts, synostoses, atrophic abnormalities, neoplasias etc. among which cleft lip and/or palate caused by abnormal facial development during gestation is one of the most prevalent congenital defects. Its overall occurrence is about 1:700 ranging from 0.02 to 4.04 in 1000 live births. There are different etiologic factors considering the cleft cause. In most cases the exact cause is unknown, but it is thought to be a combination of genetic (internal) and environmental (external) factors. A cleft lip and palate can have a profound psychological impact both on the parents and the child. It affects the appearance of the face, also lead to problems with feeding, speech and language and hearing –due to ear infections. Speech and aesthetic concerns seem to have been important factors affecting the health-related quality of life for children with oral clefts. It is obvious that cleft lip and palate can have a substantial impact on the health economics of countries in the developing world. The multispecialty approach to the care of children with clefts is highly recommended. A research registry can be of invaluable assistance to physicians and researchers by providing an available panel of patient information that could assist in understanding the patients they are serving, utilization of health care services, and the design and implementation of research studies to improve patient care. The Cleft Lip/Palate and Craniofacial Anomalies Registry may be functioning with a mission “to promote better understanding of cleft lip/palate and craniofacial anomalies and to improve patient care and health care planning. Data collection can provide better resources for future interventional studies. As it helps to have an accurate picture of the children’s number in need of treatment in a population. Recording the data of cleft patients and treatment teams and their workload is necessary for planning about providing training centers for members of treatment teams.