The necessity of establishment of Craniofacial Anomalies Registry in Iran

Type Journal Article - Journal of Craniomaxillofacial Research
Title The necessity of establishment of Craniofacial Anomalies Registry in Iran
Author(s)
Volume 1
Issue 3
Publication (Day/Month/Year) 2014
Page numbers 69-73
URL http://jcr.tums.ac.ir/index.php/jcr/article/viewFile/19/18
Abstract
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.

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