Oral Cleft Study – Parents of Healthy Children Ages 5-17

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 1-visit research study to help 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. People 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 Families 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 YOU?

• Parent of a child aged 5-17
• Child does not have a cleft lip or cleft palate, or a genetic syndrome
• Child has not had any major facial surgery
• Child is Caucasian (white), Hispanic, or Asian
• Parent is willing to accompany child to study visit

WHAT PARTICIPANTS CAN EXPECT

Study participation requires 1 visit lasting about 90 minutes, and includes the following:

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