Criteria:Who is eligible to participate?

• No matter if you are the only person or one of many people in your family who is deaf or hard-of-hearing, you may be eligible to participate as long as you have been deaf or hard-of-hearing since birth or early childhood. You must also be at least 18 years old to participate in this project.

• Your participation is entirely voluntary and all the information will be kept strictly confidential.

• All the audiology and genetic testing and counseling is done at no charge and can take place at either University of California, Los Angeles (UCLA) or at California State University, Northridge (CSUN).

• NEW SITES! All audiology and genetic testing and counseling can now be done at California School for the Deaf, Fremont (CSDF), or at California School for the Deaf, Riverside (CSDR).

Procedure:What is involved in participation?

1. Audiology Appointment - approx 2 hrs

There are different types of deafness. The primary focus of our study is on the sensorineural type. It is important to first learn if your deafness is of this type. We would ask you to have some audiological tests that will be conducted by our reserach team to learn if you have this type of deafness. You wil be asked to fill out a questionnaire on the same day.

2. Genetic Counseling / Testing Appointment - approx 2 hrs

When people undergo genetic testing, they generally meet with a genetic counselor first to discuss the benefits, risks, and limitations of the test. In this project, a genetic counselor will discuss the option of testing two genes called Connexin 26 and Connexin 30. You will be asked to fill out another questionnaire. If you would like to have the Connexin 26 and Connexin 30 genetic tests, we will gently rub the inside of your cheeks with a small soft brush to obtain cells from your mouth.

3. Genetic Results Apointment 0 approx 1 hr

We will ask you to return to meet with a genetic counselor who will give you the Connexin 26 and Connexin 30 genetic test results and will explain to you what they mean.

4. Follow Up Questionnaires - From Home

We will send you two (2) questionnaires, the first one month after you have received your genetic test reslts. You will receive your second questionnaire six months after your results appointment. All questionnaires can be done online from any computer with internet access.

Can my opinion still count even if I don't want to take the genetic test?

If you decide you do not want to have the Connexin 26 and Connexin 30 tests, your opinions are still welcome and you can still participate in the study by filling out questionnaires.

What is Connexin 26 and Connexin 30?

Benefits of genetic testing~ Risks of genetic testing

Participation: How do I participate?

If you would like to learn more about participating in the Deaf Genetic Project, please send your contact information to Deafgenetics@mednet.ucls.edu and we will get back to you by email or VP/tty/phone.

You can also view our contact pager for more information on how to contact us.