Profiling Misophonia: Why do Some People Hate Certain Sounds?

You are being invited to take part in a research study. Before you decide whether or not to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully.

What is the purpose of the study?

Misophonia is a strong aversive reaction to particular sounds that can often impact negatively on the quality of life. The aim of this research is to find new ways of identifying people with misophonia, and to find other traits that go hand-in-hand with misophonia. This might explain why it emerges in some people and not others. 

You can take part in this research whether you think that you have misophonia or not. The latter will act as a control group. 

Why have I been invited to participate?

You have been asked to take part either because you self-identify as having misophonia (e.g. via online forums) or because you have been invited to complete this survey from a sample of the general population (most of whom will not have misophonia).

We are testing people between 18-70 years of age. To take part you should have normal or corrected-to-normal vision and hearing (i.e. wearing glasses or hearing aids are generally ok). You can still take part if you are colour-blind. You can also take part if you have tinnitus (ringing in the ears) or hyperacusis (sensitivity to loud sounds), provided you don’t have uncorrected hearing loss. We will ask you about these things. You may be invited to a follow-up study after this one, where we will show some striped patterns that some people find aversive. These will only be shown briefly. People with epilepsy should not take part.

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part you can download a copy of this information sheet to keep and you will be asked to provide consent. If you decide to take part you are still free to withdraw at any time during the study and without giving a reason. You can ask for your data to be removed from the analysis within four weeks of taking part.

What will happen to me if I take part?

You will be asked to complete a set of questions online about misophonia that takes around 15 minutes. This is part of a larger project in which we explore the wider profile of misophonia and this initial step will enable us to establish a pool of potential volunteers. We may re-contact you to take part in further studies, but participation is entirely voluntary and you are under no obligation to take part.

What are the possible benefits of taking part?

This research will increase our scientific knowledge of an underexplored area, but it has no immediate bearing on any medical diagnosis or treatment. By publishing the findings, the results will hopefully inform future policy and practice in the field.

Will my information in this study be kept confidential?

All information collected about the individual (‘personal data’) will be kept strictly confidential (subject to legal limitations). You, and your data, will be assigned a unique identifier that will be used to name the files. Outputs arising from the research (e.g. scientific publications) will not contain any personal data that would permit identification.

Your name and contact details will be stored separately from your data in a password protected file. This will be stored on a University computer and will never be shared with others.

The anonymised data will be uploaded to a recognised open access repository to enable researchers from around the world to be able to reanalyse and make use of the data.

What should I do if I want to take part?

If you would like to take part then please click below where we will ask you to provide consent. 

What will happen to the results of the research study?

The results of the study will be published in scientific journals. We will email you a summary of our findings (if you want one) and a lay summary of the results will be available on our website (http://www.misophonia-hub.org/). 

Who is organising and funding the research?

This study is being conducted by staff and research students at the University of Sussex, led by Professor Jamie Ward and Prof. Julia Simner, and postdoctoral researcher, Dr. Louisa Rinaldi. The research is funded by the Misophonia Research Fund (https://misophoniaresearchfund.org/), an initiative of the Ream Foundation (http://reamfoundation.org/). 

Who has approved this study?

The research has been approved by the the Sciences & Technology Cross-Schools Research Ethics Committee (C-REC) of the University of Sussex, ethical review application number (ER/JAMIEW/24). If you have any ethical concerns, please contact the ethics chair (crecscitec@sussex.ac.uk). The University of Sussex has insurance in place to cover its legal liabilities in respect of this study.

Contact for Further Information

For further information, please contact Professor Jamie Ward (jamiew@sussex.ac.uk; 01273 876598).

 Thank you

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