FREQUENTLY ASKED QUESTIONS (FAQ)
We just learned my child has hearing loss and the doctor thinks it’s due to Auditory Neuropathy Spectrum Disorder or ANSD. Do you have any services available for my child?
Caring for a child with hearing loss can be overwhelming. You’re doing the right thing trying to get answers for your child. Two things:
1. Please know we recommend you consult with your doctor or hearing specialist, if not already.
2. Our sponsored genetic testing program, Amplify™ is available for you to talk to a genetic counselor from home and order the test.
Is my child eligible for genetic testing?
Children who meet the criteria below would qualify for Regeneron’s Amplify™ no-cost genetic counseling and testing program offered by Regeneron in partnership with Genome Medical (genetic counseling provider) and Prevention Genetics (genetic test provider).
Eligibility criteria:
– Medical history consistent with auditory neuropathy diagnosis (absent or highly atypical Auditory Brainstem Response (ABR), presence of Otoacoustic Emissions (OAEs), and/or Cochlear Microphonic (CM)),
– Must live in the United States, and
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What is Auditory Neuropathy?
Auditory Neuropathy is a hearing condition where the inner ear is able to successfully process sound but is unable to send sound from the ear to the brain. To learn more, check out the following video for more details.
What is Otoferlin (OTOF)?
Otoferlin is a genetic variant that can cause Auditory Neuropathy Spectrum Disorder (ANSD). A working otoferlin gene is crucial to allow sound to travel from the ear to the brain. To learn more, check out the following video for more details.
What is a genetic counselor?
Genetic counselors are healthcare professionals with education focused on medical genetics and counseling. Genetic counselors are specifically trained to:
– Help you understand how your personal and family medical history may impact your and your family’s health,
How can I prepare for my appointment with a genetic counselor?
– Gather your personal and family health history. Talk to family members about any health conditions in the family, as well as the age that relatives were diagnosed.
What should I expect during my appointment with a genetic counselor?
You will receive a phone call from your genetic counselor at the time of your scheduled appointment. Appointments are typically 30-60 minutes.
During the appointment, your genetic counselor may review your personal and family medical history, assess your risk for inherited genetic conditions, and discuss the benefits and limitations of genetic testing. Your genetic counselor may also address your concerns or questions about genetic testing. If genetic testing is performed, your genetic counselor may explain what your results mean for you and your family.
What are the potential benefits of genetic testing?
According to the CDC, key reasons for getting genetic testing include:
After learning more about genetic testing, you can decide if it’s right for you.
What are the potential risks of genetic testing?
Generally genetic tests have little physical risk if done properly. Genetic testing can have emotional, social and financial risks as well. Discuss all risks and benefits of genetic testing with your doctor, a medical geneticist or a genetic counselor before you have a genetic test.
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