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Cleft Lip and Palate

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  1. What is cleft lip and palate?
  2. Why are we studying cleft lip and palate?
  3. What is the cleft lip and palate study?
  4. Who can enroll in the cleft lip and palate study?
  5. How do I join the cleft lip and palate study?
  6. Does participation require any travel?
  7. Why do we need this information?
  8. How can I get more information about the cleft lip and palate study?

What is cleft lip and palate?

Cleft lip and palate is an abnormality that occurs when the face is forming.  Parts of the face are unable to fuse leaving an open space.  This can occur on both sides of the face (bilateral cleft lip and palate) or on one side (unilateral cleft lip and palate).  Males are affected twice as often as females.  Cleft lip and palate occurs in one out of 1,000 births and is a common birth problem.  About 4,000 babies are born with isolated cleft lip and palate in the United States each year. 

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Why are we studying cleft lip and palate?

We are studying cleft lip and palate because it is a common birth defect with a significant health care burden.  Children require multiple surgeries to correct the lip, palate, and nose.  The causes of cleft lip and palate are not known but genes and environmental factors are considered to be important.  Identification of the causes may allow development of new treatments and/or identification of individuals who are at risk to have children with cleft lip and palate. 

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What is the cleft lip and palate study?

The purpose of this research study is to identify the genes and environmental factors causing isolated cleft lip and palate.  We are collecting information about pregnancy specific exposures and obtaining blood samples from which DNA (genetic material) will be made.  We will use the DNA to determine whether specific genes are associated with cleft lip and palate.  We will also correlate whether specific types of exposures are linked to cleft lip and palate. 

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Who can enroll in the cleft lip and palate study?

Individuals born with cleft lip and palate, their parents, and other family members.  We are particularly interested in families in which there is more than one family member with cleft lip and palate. 

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How do I join the cleft lip and palate study?

Individuals and families who join the cleft lip and palate study will:

  • learn about the study

  • read and sign a consent form

  • complete a short questionnaire

  • provide a blood sample

Permission to contact additional relatives may also be requested especially if there is a family history of cleft lip and palate.  All information is kept strictly confidential.  Participation is voluntary and you can withdraw from the study at any time.  This study has been approved by the Institutional Review Board of the University of Texas Health and Science Center - Houston. 

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Does participation require any travel?

No. The questionnaire can be completed by telephone or mail, and the blood samples can be sent by mail.  There are also no costs associated with joining the cleft lip and palate study. 

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Why do we need this information?

Previous studies suggest that cleft lip and palate is caused by a combination of genetic and environmental risk factors.  However, very little is actually known about the specific causes of cleft lip and palate.  The information obtained from the study may provide important clues. 

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How can I get more information about the cleft lip and palate study?

To learn more about the cleft lip and palate study and how to take part in the search for the causes of cleft lip and palate, please contact:

Elena Serna
Project Coordinator

Tel:  (713) 500 - 5785
email: Maria.E.Serna@uth.tmc.edu

The University of Texas
Health and Science Center at Houston
Medical School
6431 Fannin Street, Room 3.308
Houston, Texas 77030

 

Jacqueline T. Hecht, PhD
Professor, Department of Pediatrics
Division of Medical Genetics

email: Jacqueline.T.Hecht@uth.tmc.edu

The University of Texas
Health and Science Center at Houston
Medical School
6431 Fannin Street, Room 3.136
Houston, Texas 77030

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