Tinnitus UK will work closely with University partners to understand and replicate their ethics systems into a Tinnitus Biobank. This will ensure that we are implementing best practice into our systems, our processes and our governance. We will also continually review our practises to ensure that we comply with all data regulations and that our compliance is excellent.
Tinnitus Biobank
The sound of science - the urgent need for a Tinnitus Biobank
A Tinnitus Biobank could allow us to understand the condition much better and answer many questions that, thanks to chronic underinvestment, so far remain unanswered.
Update, March 2025
We’re thrilled to share an update on our Tinnitus Bio-bank project. The first stage, a feasibility study, is now complete. This study aimed to determine the viability of our proposals and the demand among researchers for a tinnitus-specific biobank. It focused on two key areas: reviewing existing literature and exploring data collection methods.
We reviewed research literature dating back to 1865, creating a database of tinnitus biobanking examples. Out of 100 scientific papers that met our criteria, most were published in the last decade, indicating a growing research market for tinnitus data.
However, our review highlighted deficiencies in existing biobanks. Many assessments of tinnitus and hearing were suboptimal, with general biobanks only including one or two simple questions. Additionally, much current research has only utilised the database component, neglecting the bio-specimen data—the “bio” part of biobanks.
Having established the current availability and quality of tinnitus biobank data, we investigated how to develop a tinnitus-specific biobank. Partnering with researchers at the University of Manchester, we developed a lab-based battery of tests and questionnaires. After completing the lab phase, we field-tested these tests using a mobile facility.
In 2023, the field study took place using the University of Manchester’s audiology van, visiting various locations in Greater Manchester. The field test confirmed the feasibility of collecting high-quality data this way.
However, to proceed further, we need to address some issues. Volunteer recruitment and appointment scheduling need improvement due to many unfilled, cancelled, or missed appointments. The current mobile testing vehicle is outdated and lacks adequate climate control, causing cancellations in hot weather. A modern, better-equipped van is essential.
Data collection took longer than expected, and with only one testing vehicle, it could take up to 15 years to gather enough data for a workable tinnitus biobank. Ideally, we need additional staffed audiology vans to expedite this process.
The pilot phase has proven the potential demand for a tinnitus biobank and the feasibility of our proposed development with some adjustments. Tinnitus UK’s Board is now considering the next steps for this project which could include appointing a project manager, exploring partnerships, or lobbying for better tinnitus representation in general biobank projects.
Update, 25 July 2023
We’re excited to be able to update you on our work towards a Tinnitus Biobank.
Researchers at the University of Manchester recently completed the first stage of a feasibility study for the Biobank. They’ve been working with volunteers to consider the questions to ask and the tests to perform to make sure we get the best and most useful data possible.
The next stage is to take this ‘test battery’ and trial it in the field, using the University’s mobile testing van.
This pilot testing will take place in Greater Manchester over the late summer and autumn.
If you are over 40 and live or work within Greater Manchester (the boroughs of Manchester, Stockport, Tameside, Oldham, Rochdale, Bury, Bolton, Wigan, Trafford or Salford) we would like to invite you to take part in the pilot testing.
This will involve you completing a number of questionnaires, some of which you may do at home, and then visiting the mobile testing van at a location within your borough for further testing with the research team.
Testing will take place between Monday – Friday, 9am to 5pm. Please note that participation is voluntary, and there will be no payment for your time or travel expenses.
If you would like to sign up to register your interest in taking part (no obligation at this stage) please email Lucy Ferrie from the research team at lucy.ferrie@manchester.ac.uk.
We believe a Tinnitus Biobank would cost approximately £4m to establish, which is 0.53% of the £750m that tinnitus costs the NHS each year.
We are calling on the UK government and research funders to fast track their support for tinnitus research-funding to establish a Tinnitus Biobank.
You can also donate to us directly.
There are very clear and strict regulations around storing sensitive data. This includes only storing the minimum amount of data that you require in order to conduct your study and that the data is as untraceable as possible.
All records will be stored digitally on password-protected, encrypted servers. Additionally, only people who are required to view and analyse the data will be given access.
These procedures will be regularly reviewed to ensure they comply with the latest advice and regulations for sensitive data storage.
There are several aims of a Tinnitus Biobank, including finding an objective measure, a biomarker and a set of subtypes which will ultimately help develop a pathway to finding a cure for tinnitus.
The most significant challenge is funding. Creating a Tinnitus Biobank, as we envisage, would equate to the largest single tinnitus research project outside of pharmaceutical research.
A biobank is a collection of biological data which helps to inform, develop and build a picture of a health condition. In this instance, we will be looking at tinnitus.
A biomarker is a naturally occurring molecule, gene, or characteristic by which a particular pathological or physiological process, disease, etc. can be identified.
A subtype is a special type included in a more general type, or a type that is a subdivision of a broader type.