Orofacial Cleft Study– Healthy Children

STUDY BASICS

Are you are the parent of a healthy child age 5-17, with no personal or family history of cleft lip and/or cleft palate? Your child may be able to take part in a research study to identify the inherited factors (genes) that may play a role in the development of cleft lip and cleft palate. Compensation provided.

STUDY PURPOSE

Cleft lip and cleft palate (called orofacial clefts) are common birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Children with these conditions often undergo multiple surgeries and other medical procedures. Although the exact cause of orofacial clefts is unknown, affected individuals are more likely to have a relative with a cleft than would be expected by chance. This suggests that genes may play a role in why certain individuals are born with orofacial clefts. The purpose of the Pittsburgh Orofacial Cleft Study is to learn more about the inherited factors (genetics) of cleft lip and/or cleft palate. Researchers will compare people with and without orofacial clefts.

COULD THIS STUDY BE RIGHT FOR YOUR CHILD?

• Child age 5-17, who can be accompanied by a biological parent
• Caucasian, Asian, or Hispanic
• No personal or family history of cleft lip and/or cleft palate
• No personal or family history of genetic disorders or severe birth defects
• Child without major facial surgery

WHAT PARTICIPANTS CAN EXPECT

Study participation requires 1 visit lasting about 1.5 hours, and includes the following:

• DNA sample (saliva specimen)
• Questionnaires (parent only)
• Speech assessment
• Photographs, videos, and assessments of your face and mouth
• Ultrasound of your upper lip
• Dental impressions
• Scan of your hands
• Smell test