Hemifacial Microsomia is characterized by an asymmetric face due to underdevelopment of the cheek, chin, mouth, ear, and/or eye. It is one of the most common craniofacial malformations, yet there have been few studies of its impact on affected children. The Hemifacial Microsomia Follow-up study aims to evaluate quality of life, social well-being, and cognitive functioning of early elementary-aged children with this birth defect. In addition, dental health will be assessed and the number and types of medical procedures will be tabulated.
The study population includes over 250 children with hemifacial microsomia or ear anomalies and over 850 control children without any craniofacial malformations. Cases and controls come from across the U.S. and Canada ; their mothers were originally enrolled in a separate study of pregnancy risk factors for this malformation. For the follow-up study, mothers, cases, and controls answer questions about quality of life, behaviors, and social adjustment. Teachers of cases and controls answer similar questions and assess the child’s ability to match pictures to words and to draw simple objects. Case and control dentists answer questions about caries, hypodontia, malocclusion, periodontal status, and overall oral health. Medical records will be systematically reviewed to tally all surgeries, treatments, interventions, and other speciality consultations.
Investigators:
Martha Werler, Sc.D., Principal Investigator
Slone Epidemiology Center
Mathew Speltz, Ph.D., Co-Principal Investigator
Childrens's Hospital and Medical Center Psychiatry & Behavioral Medicine, Seattle, WA
Catherine Hayes, D.M.D., D.M.Sc., Co-Investigator
Tufts University School of Dental Medicine, Department of Public Health & Community Service
Brian Leroux, Ph.D., Co-Investigator
University of Washington, Dental Public Health
Study Staff:
Jane Sheehan R.N., Project Coordinator
Sandra Hatfield, Program Coordinator
Lisa Crowell R.N., Nurse Interviewer
Marguerite Dembro, Research Assistant
Carolina Tejedor Meyers, Bilingual Interviewer
Jaclyn Bosco, Data Analyst
Source of funding:
National Institute of Dental and Craniofacial Research
Study Period:
2004 – 2009
Publications:
Werler MM, Starr JR, Cloonan YK, Speltz ML. Hemifacial microsomia: From gestation to childhood. J of Craniofacial Surgery, in press.
Contact information:
Sandy Hatfield, Program Coordinator: (617) 734-6006
If you are a study participant you may also use the following numbers:
1-888-489-8826
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