Oral-facial clefts are birth defects in which the tissues of the mouth or lip don't form properly during fetal development. In the United States, clefts occur in 1 in 700 to 1,000 births, making it one of the most common major birth defects. Craniosynostosis consists of premature fusion of 1 or more cranial sutures, often resulting in an abnormal head shape. It occurs approximately one per 5000 births. Children with either of these defects may stand apart from their peers in terms of behavioral or social adaptation for various reasons. For example, oral cleft-affected children may experience complications such as speech and dental problems, which can effect social development. For both types of defects, hospitalizations are necessary for surgical correction, which can also negatively affect social development. This study will identify the risks of developmental delays in social and behavioral domains among children with craniofacial malformations.

The study population includes approximately 145 oral cleft subjects, 45 craniosynostosis subjects, and 200 controls without a malformation who are currently between five to seven years of age. The mothers of these children were formerly interviewed for the Massachusetts Center of the National Birth Defects Prevention Study. For this follow-up study, mothers have completed questionnaires about quality of life, behaviors, and social adjustment of their child.

Investigators:

Martha Werler, Sc.D., Principal Investigator
Slone Epidemiology Center

Marlene Anderka, Sc.D., Co-Investigator
Massachusetts Department of Public Health

Mathew Speltz, Ph.D. and Brent Collett, Ph.D., Co-Investigators
Children’s Hospital and Regional Medical Center, Seattle, Washington

Yona Cloonan, Ph.D., Analyst
University of Pittsburgh School of Dental Medicine

Jane Sheehan, R.N., M.S., Project Coordinator
Eileen Mack, B.A., Research Assistant

Source of funding:

CDC - Center For Disease Control

Study Period:

2006-2007

Publications:

Cloonan YK, Collett B, Speltz ML, Anderka A, Werler MM. Psychosocial outcomes in children with and without non-syndromic craniosynostosis: findings from two studies. Plast Reconstr Surg, in review.

Collett BR, Cloonan YK, Speltz ML, Anderka M, Werler MM. Psychosocial outcomes for children with and without orofacial clefts and their parents. Cleft Palate Craniofac J, in review.

Contact information:

Jane Sheehan Project Coordinator 617-734-6006 or email cranio@slone.bu.edu.