Opportunity to participate in research study

Now enrolling!

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A Natural History Study in Individuals with Otoferlin Gene (OTOF) - mediated Hearing Loss

This study aims to gain a better understanding of the natural course of hearing loss caused by changes in the otoferlin gene (OTOF).
We invite children and adults with sensorineural hearing loss in both ears, including auditory neuropathy or a history of auditory neuropathy, to participate in this research study.
Auditory neuropathy is a clinical presentation of hearing loss that can have a genetic cause. There are many genes that could be involved. One gene is called the otoferlin gene (OTOF), which makes a protein called otoferlin. Otoferlin is essential for the normal functioning of the ear. Changes in OTOF can cause significant reduction in sound transmission from the inner hair cells to the hearing nerves, making it difficult to hear and to understand speech.
This study aims to gain a better understanding of the natural course of hearing loss caused by changes in OTOF.
Participants will have a genetic test performed, if test results are not already available. This involves taking a blood or saliva sample to look for changes in genes associated with hearing loss.
If the results show hearing loss is caused by a change in OTOF we may invite the participants to share hearing and medical information and/or take part in hearing testing at University College London approximately every six months for up to a maximum of five years. However, changes in OTOF are rare, so there is a good chance that the participants will not be invited to share hearing/medical information or to attend ongoing appointments.

This study is being conducted at University College London, Ear Institute. It is part of an international study sponsored by a pharmaceutical company called Akouos, Inc., a wholly owned subsidiary of Eli Lilly and Company.

CONTACT US:
University College London, Ear Institute, evidENT Team, uclh.evident@nhs.net

Please download this flyer for further information.