Fuchs' Endothelial Corneal Dystrophy (FECD) Genetics Multi-center Study

Have you or a family member been diagnosed with Fuchs' Dystrophy and have had a corneal transplant?

Who can help?

If you, or one of your family members, is diagnosed with Fuchs' Dystrophy and have undergone a corneal transplant, we invite you to participate in a national study, funded by the National Eye Institue. Family members of the corneal transplant patient, known to be affected or unaffected, may be eligible to join this study.

For more information, please visit us on the web at:
http://vrcc.case.edu
or call 216-844-7440

FECD Genetics Multi-center Study

As a family touched by Fuchs' Endothelial Corneal Dystrophy (FECD), you know how important it is to learn more about this progressive eye disease. Our goal is to define the genetic basis of FECD, the most common corneal dystrophy requiring corneal transplants in the United States.

FECD is slightly more common in women than in men. It is It is estimated that on average, half of the family members of a FECD patient may carry a gene for or suffer from the condition. The identification of the gene(s) that lead to FECD may allow development of new therapies to delay or prevent the onset of the disease. It could also help in providing earlier diagnosis techniques and in counseling patients. To find the gene(s), we need your help.

If you, or a family member has been diagnosed with FECD, and has had a corneal transplant, please consider participating in this study.

What is the FECD Genetics Multi-center Study?

It is a nationwide study to explore how FECD runs in families. Approximately 500 families will be recruited in the study from 2006 to 2009. Data from the participants will be used to find the gene(s) associated with the disease.

Who is encouraged to participate?

We are particularly interested in finding participants who hve had a corneal transplant and also have a brother(s) and/or sister(s) who is affected by the disease. Other affected family members such as aunts, uncles, nieces, nephews, and cousins may also be encouraged to participate. Parents may be able to participate as well.

What will participants have to do?

Participants will have a 20-30 minute eye examination performed by an ophthalmologist to determine the degree of FECD. They will also be asked to provide a blood sample and to give permission to collect information from their medical records. Participants will be asked to provide basic information about family members such as relationship to participant (parent, brother, sister, child, spouse, aunt, uncle, etc.), city of residence, and FECD affection status.

What will happen to my blood and health information?

All blood samples and health information will be coded and kept strictly confidential. Researchers will carefully protect the security of all genetic information.

Do all family members have to live near each other to participate?

No. Family members can be examined at any of the more than 20 participating states nationwide.

Is there any cost to participants?

There is no cost to participants. In fact, some expenses (such as parking fees) may be paid.

How will my family benefit?

There may be no direct benefit to you or your family as a participant in this research project. After the examination, any findings will be discussed with you. Participation may lead to earlier diagnosis and treatment of FECD for your family members and future patients.

How can I find out more?

For more information about the study and to learn how to participate, you may visit us on the web at http://vrcc.case.edu and click on 'FECD Genetics study'. You may also contact your local study recruitment site.

Click here for a list of the study recruitment sites

Sponsors:

National Eye Institute
Case Western Reserve University
University Hospitals Health System, University Hospitals of Cleveland
Research to Prevent Blindness
Lions International