A new national registry is helping researchers understand more about inherited hearing loss – and could help bring about new treatments.
The HEDGE study (which stands for Hearing, Ear, Deafness and Genetics) is the first of its kind in the UK. It’s a patient registry created by experts at UCLH, Great Ormond Street Hospital (GOSH), and UCL, and managed by the NIHR UCLH Biomedical Research Centre.
Anyone - adult or child - who has a known genetic cause of hearing loss or a strong family history can sign up to take part.
Participants will share details about their hearing, general health, hearing tests, scans, and genetic test results. This information will help researchers uncover what causes inherited hearing loss. Participants will also be invited to join clinical trials that may be suitable for them. These trials could include testing new treatments or studying how genes and other factors affect hearing.
Hearing loss affects around 1.5 billion people worldwide - and is on the rise. One major cause is genetics, but there’s still a lot we don’t know about how inherited hearing loss develops or how to treat it.
The HEDGE registry brings together world-leading researchers in hearing, genetics, and data science. The team includes audiologists, ear, nose and throat (ENT) surgeons, geneticists, and researchers from UCL, UCLH, and GOSH – hospitals that care for large numbers of children and adults with hearing problems.
As of the end of July 2025, HEDGE was the top recruiting ENT study in England and North London.
The study is led by a team of specialists: Prof Nish Mehta (UCLH ENT surgeon), Mr Robert Nash (GOSH ENT surgeon), Dr Emma Clement (GOSH genetics consultant), and Professor Sally Dawson (UCL Ear Institute).
More than 150 patients have already joined the registry. Families under the care of UCLH or GOSH who think they may be eligible can email uclh.hedge@nhs.net to find out more.
How it works
When someone joins the registry, the team collects their hearing and health history, test results, and samples like blood or saliva for genetic testing.
Researchers will then look for links between symptoms (like hearing loss, tinnitus, or dizziness) and genetic information. If relevant clinical trials open, patients in the registry may be invited to take part – giving them access to cutting-edge research on new treatments and technologies, including hearing devices, drugs, or gene therapies.
Prof Mehta said: “Many types of inherited hearing loss still don’t have a clear genetic diagnosis. Even when we know which gene is involved, it’s often not clear how it causes hearing loss. Through this registry, we want to change that – and find better ways to treat people.”
Emma Clement, Consultant in Clinical Genetics and Genomic Medicine at GOSH, said: “It is great to be able to offer children, young people and families affected by hearing loss the opportunity to participate in HEDGE. We hope that the registry will allow us to better support research into genetic deafness and ultimately inform and improve patient care.”
Couple Sandra and Lukasz, and their daughter Phoebe, from Hertfordshire, have signed up to be part of HEDGE. Sandra and Lukasz said: “We’re incredibly grateful to be part of the HEDGE study. Taking part felt like a natural step for us – it’s our way of giving back after receiving such life-changing support throughout our daughter’s cochlear implant journey. We hope that by contributing to this important research, we can help break down barriers, raise awareness, and make the path clearer for other families. If our story can play even a small role in improving early diagnosis or understanding genetic causes of hearing loss, then we know it’s worth it.”
