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Research guide for patients

What exactly is research and why does it matter?

By participating in different research studies when you are eligible, you can help researchers to answer important questions about smell disorders. 

One of the biggest barriers in research studies is finding the right participants. Patient experience is highly valued, so if you are interested in helping to improve the understanding of olfaction and smell disorders please read on.

What is research?

When we hear organisations and the media talk about ‘research’, various images pop into our heads – not least of people in white lab coats, in a laboratory, pipetting brightly coloured liquid into small tubes.

While this does reflect some of the research that goes on around the world, it’s only a very small part. This type of work tends to be at the very early stages of understanding different cells, conditions and potential treatments. But there are many types of research that don’t look like this at all – and these are far more likely to require the involvement and participation of volunteers, people like you.

Some of the types of research that might need your help to understand more and find answers are:

Surveys

These can take different forms, and may require in-depth interviews with some people about their experiences. Surveys are very helpful in building a picture of people’s experiences, symptoms and the impact of a particular condition. 

Surveys can help build knowledge of how smell disorders progress with time, which symptoms people feel require treatments, how and why disorders develop, as well as building a picture about smell disorders and how they affect people.

Observational studies

As the name suggests, these types of studies involve observing people – either directly or indirectly. They might include surveys to help to build a longer-term picture, or ask for blood and other samples. One very famous observational study is the Nurses’ Study, which has been looking at various health measures and their association with disease in nurses since 1976. It has told us a lot about diet and its link to diseases, among other things.

Often, observational studies will use information from very large numbers of people to better understand what may influence health, disease and recovery. Although you might be one among many people participating, each person’s information is an important contribution.