Hearing loss affects over a billion people worldwide and it can significantly impact communication, social health or wellbeing, and long-term health. Although many genes linked to hearing loss have been identified, we still have much to learn about how they lead to different patterns of hearing change, and what treatments are best for each condition.

HEDGE has been created by hearing and genetics experts at University College London Hospitals (UCLH), Great Ormond Street Hospital (GOSH), and the Ear Institute, UCL. It is funded by the NIHR UCLH Biomedical Research Centre. 

Learning from HEDGE will help improve diagnostic accuracy, support future research, and prepare for emerging treatments such as gene-based therapies. 

We are particularly keen to enrol: 

• Those with a confirmed genetic diagnosis, OR
• Those who have had ‘normal’ genetic testing via the NHS or an accredited lab* with:
  1. a family history of hearing loss (2 or more affected close family members), AND
  2. onset of hearing loss before 45 years of age, AND
  3. a moderate, severe, or profound hearing loss in both ears.

If you are unclear if you meet the criteria for enrolment, please do get in touch.

*Individuals who wish to explore the possibility of genetic testing for hearing loss via the NHS can ask their GP for a referral to their local clinical genetics service. Alternatively, they can discuss this with their ENT or audiovestibular medicine care team.

If you wish to find out more, or express an interest in participating, you can contact the HEDGE team by emailing uclh.hedge@nhs.net.

By integrating clinical care with cutting-edge research, HEDGE aims to support personalised management of hearing loss today while helping unlock new treatments for the future.

IRAS ID: 309507, REC NUMBER: 23/LO/0585, CPMS NIHR portfolio study ID: 57335.