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.
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, 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 firstname.lastname@example.org.
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.