Research guide for patients

What exactly is research and why does it matter?

By taking part in research studies, you can help researchers to answer important questions about smell disorders.

What is research?

When we hear organisations and the media talk about ‘research’ we may have an image of people in white coats in a laboratory, pipetting brightly coloured liquid into small tubes. Or it might be an new operation, or patient trials to test new drugs.

But this practical research is only a very small part of a long process to understand conditions and potential treatments.

A lot of key breakthroughs come from studies and surveys and these are far more likely to require the involvement and participation of volunteers, people like you.

By giving your time to complete surveys about your experience, or your permission for your data to be used, you are building a library of knowledge that will help doctors and scientists understand smell disorders better and develop new ways of treating them.


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

These types of studies involve observing people – either directly or indirectly. They might use data to build a longer-term picture, or ask for blood and other samples. 

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.