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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Other disorders of ear
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Hearing loss currently affects 1.5 billion people globally and is rapidly rising, costing almost $1 trillion/year. It has a profound impact on social, mental, and physical health and is currently the largest identified modifiable risk factor for dementia. Whilst there are many causes of hearing-loss, genetic susceptibility seems to pay a key role in the many presentations of hearing loss. In the two most common presentations of hearing loss, congenital and age related, association studies have identified 150 and 44 genes related to these presentations, respectively. Whilst many hearing-loss related genes have been identified, both the mechanisms through which they predispose to hearing loss and the phenotypic patterns of hearing- loss they result in remain poorly described.
Diagnosing underlying genetic causes for hearing loss will help inform treatment and management decisions, particularly for genes that have been well mapped to phenotypic presentation. To ensure that genetic diagnoses improve patient care it is essential that the national infrastructure that captures genotypic data is mirrored with a complementary structure that continues to capture phenotypic data, especially as new genes are discovered. This will allow for a sustainable model that allows better disease characterisation that can rapidly be translated back to inform treatment decisions.
HEDGE aims to bring together the scientific and clinical expertise in an integrated academic-clinical service to provide care for UCLH and GOSH patients. We will offer and implement a standardised pathway from research to the clinic to investigate hearing loss in children and adults using gene and mechanism testing. We hope with this integrated otogenetic approach, we will be able to identify their likely genetic susceptibility, better understand their mechanism of hearing loss, provide prognostic information to inform decision making and in the future offer precise therapeutic solutions.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cohort study;
You can take part if:
You may not be able to take part if:
i) Patients unwilling to consent. ii) Parents/Guardians unwilling to consent for those < 16 years of age. iii) Personal Consultee (in the case where patients > 16 years of age assessed unable to consent) advises against inclusion of patient in the registry. iv) Parents, siblings and control individuals that do not require blood or saliva tests for clinical purposes that have a needle phobia.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by University College London and funded by NIHR University College London Hospitals Biomedical Research Centre .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 57335
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
