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
Harvard School of Dental Medicine, Oral Health Policy & Epidemiology

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
Jaclyn Bosco, Research Data Analyst

Source of funding:

National Institute of Dental and Craniofacial Research

Study Period:

2004 – 2009

Publications:

None to date

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