Usher Syndrome Genetic Testing Initiatives
Unraveling USH is a collaborative effort with Project Usher at the Institute for Vision Research to offer guidance and affordable testing to people who have been unable to get genetic testing in the past, either due to lack of access or financial barriers.
Visit our Q&A page to learn more about the importance of genetic testing and other frequently asked questions.
To participate in Unraveling USH, you should:
- have a confirmed or suspected diagnosis of Usher syndrome based on clinical symptoms, as assessed by their treating physician. (For example, your doctor thinks you may have Usher syndrome because you are deaf or hard of hearing, have night blindness and progressive vision loss, and/or balance issues.)
- Work with a physician or genetic counselor to order genetic testing.
- Join the USH Trust, the largest international Usher syndrome registry in the world. This is a simple process that is our most powerful tool to bridge the gap between the Usher community and researchers.
Here's how you get started:
- Meet with your physician or genetic counselor and ask them to order the test. You can print the attached information sheet about the genetic testing initiative and take it in to your appointment with you.
- Download this letter to assist you and your physician in working together to obtain insurance coverage for testing.
- Make sure to put your genetic test results in the USH Trust.
Please know that if you participate in this program, patients must pay for the testing first and then request reimbursement from their insurance company.The Carver Lab does not bill insurance companies directly.
Before you start the testing process, please contact your insurance company to request pre-approval for testing. Below are some codes that the insurance company will likely request to determine whether your insurance company will pay for this genetic test. If not, you can download this letter to assist you and your physician in getting coverage.
Sometimes, an insurance company requests a letter of medical necessity. That can be requested from your physician or genetic counselor.
Genetic test codes for Usher syndrome genetic testing at the University of Iowa Carver testing lab:
81400, 81407, 81408, 81479
Retinitis pigmentosa: ICD9: 362.74/ ICD10: H35.52
Bilateral Hearing Loss: ICD9: 389.9/ ICD10: H91.93
Many insurance companies are currently unfamiliar with the value of genetic testing for Usher syndrome. By encouraging thousands of individuals with Usher syndrome to seek payment for their nonprofit genetic tests, Project Usher intends to demonstrate the value of such testing to doctors and insurance companies across the country.
You can help make genetic testing part of the "standard of care" for Usher syndrome in the United States by first working with your physician to obtain insurance coverage for testing.
For individuals who do not have medical insurance and who cannot afford the test, the Carver Lab is pleased to be able to provide some financial assistance to families who need genetic testing. This assistance is possible because of generous philanthropic donations to the Project Usher Fund. Patients and physicians may download this form to use in requesting Project Usher financial assistance for the Usher syndrome test.
If you have further questions about ordering genetic testing through this initiative, you may contact the Carver Lab at firstname.lastname@example.org.