The mission of the Emory Cleft Project is to learn about the causes and outcomes of orofacial clefting (OFCs). Clefts of the lip and/or palate are common birth defects that require a range of surgical and dental interventions. Although care has improved over the last several decades, the burden of these treatments can take a toll on families. We hope that our research will increase our knowledge of the causes of OFCs and will have long-term impacts on improved prevention, treatment, and prognosis for individuals affected by OFCs.
The Emory Cleft Project is now enrolling!
We are looking for study volunteers with a medical history of cleft lip and/or cleft palate and their immediate family members (parents and siblings) for a research study about genes that may contribute to clefting. Participation includes online surveys about family and medical history and DNA testing. Local participants will have photos taken. Volunteers will be compensated for their participation.
EMORY IRB# 00105750
What is a research study?
The main purpose of research studies is to gain knowledge. This knowledge may be used to help others. Research studies are not intended to benefit you directly, though some might.
How do I sign up for a study?
Contact the study staff to let them know you are interested. You will be given documents that describe the study risks, and procedures. These documents will also describe how your health information will be used and by whom. Review these documents and ask questions of the study staff. In addition to answering your questions, the study staff may ask you some questions to make sure that the study is a good fit for you and your child. It is important that you read all documents provided, ask questions of the study staff, and take time to carefully consider whether the study is right for you.
Why is this study being done?
The purpose of this study is to understand the different factors that contribute to craniofacial differences, including orofacial clefting. We do not yet understand the processes that give rise to these disorders but other studies point to personal genetic factors like family history of clefting and other medical conditions, and environmental factors like exposure to certain substances during pregnancy. The overall goal of the study is to develop a better understanding of genes related to orofacial clefts and how they interact with the environment, in order to improve treatment, management, and prevention of orofacial clefts.
Who can be part of this study?
Individuals with cleft lip and/or cleft palate and their family members.
What are the benefits?
This study is designed to learn more about the genetics of Orofacial Clefting and craniofacial differences. The study results may be used to help others in the future by improving diagnosis or treatment for such conditions.