Not yet recruitingObservational

The UK Silicosis Registry

This project is building the first UK registry for people diagnosed with silicosis or a related lung condition since 2020. Silicosis is a serious lung disease caused by breathing in silica dust, common in jobs like mining or construction. Recently, artificial stone worktops have been identified as a new cause, affecting younger people severely. This study will collect health information from your regular clinic visits, like breathing test results and job history, along with a short questionnaire. The goal is to learn more about how silicosis affects people in the UK, how to best monitor and treat them, and ultimately prevent more people from getting sick. You won't need extra hospital visits, and your care won't be affected if you choose not to take part.

At a glance

Status

Not yet recruiting

Sponsor

Imperial College London

Enrolment target

100

Start

15 Jun 2026

Estimated completion

31 Dec 2030

Silicosis or silica associated lymphadenopathy

What is this study about?

Silicosis is a serious lung disease that can't be cured. It happens when tiny silica dust particles get into your lungs and cause scarring, making it hard to breathe. This dust is often found in workplaces like mines, quarries, and construction sites.

Recently, doctors have noticed a new way people are getting silicosis: from cutting and polishing artificial stone, which is popular for kitchen worktops. This artificial stone contains a lot more silica than natural stone, and working with it without proper protection can release dangerous levels of dust. Some people, especially young men in their 30s, have developed a very severe and fast-moving form of silicosis from this.

This study is creating the first UK-wide list, called a Registry, of everyone diagnosed with silicosis since 2020. By collecting information about people's ages, jobs, and how serious their illness is, researchers hope to understand the disease better. This will help doctors know the best ways to look after patients, improve safety at work to stop more people from getting sick, and support research to find effective treatments in the future.

Key takeaways

This study helps understand silicosis in the UK.
It collects information from your regular clinic visits.
No extra appointments or treatments are involved.
Participation could improve future care and prevention.
You can stop participating at any time without affecting your care.

Who may be eligible?

This study is looking for adults aged 18 or older who have been diagnosed with silicosis in the UK since 2020. You would also need to be attending a specialist clinic for occupational lung diseases – these are clinics that deal with lung problems caused by work.

For your diagnosis to be included, it needs to be clearly linked to breathing in silica dust at work. This would be confirmed by your doctor based on your job history and special scans of your lungs (like CT scans) that show changes consistent with silicosis.

If you're under 18, if your lung changes aren't clearly linked to silica exposure, or if there's any uncertainty about your diagnosis, you wouldn't be able to join. Also, if you're unable to give your agreement to be part of the study, you won't be included.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you been diagnosed with silicosis since 2020?
Is your silicosis linked to breathing in silica dust at work?
Do you attend a specialist occupational lung disease clinic?
Is your diagnosis clear, based on job history and lung scans?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you won't need any extra hospital appointments or tests. This study is observational, which means researchers will simply collect information that's already gathered during your regular clinic visits with your usual medical team. This includes things like your height, weight, results from breathing tests, CT scans, blood tests, and details about your past jobs and any treatments you're taking.

Once a year, at your usual clinic appointment, you'll also be asked to complete a short questionnaire about your health and how you're feeling. This will take about 15 minutes and can be done on paper or online. Your medical team will then add this information, along with your other health details, to the Registry. You can stop taking part at any time by telling your medical team, and no more of your information will be added.

Potential risks and benefits

While we can't promise that joining this study will directly benefit you, the information gathered could greatly help improve care for everyone with silicosis and help prevent others from developing the condition. The main thing you'll be asked to do is complete a 15-minute questionnaire each year during your clinic visit. You have the full right to stop being part of the study at any time, and this will not affect the medical care you receive.

Locations (6)

Royal Brompton Hospital
Approximate
London, England
University Hospitals Birmingham NHS Foundation Trust
City only
Birmingham, England
Manchester University NHS Foundation Trust
City only
Manchester, England
Sheffield Teaching Hospitals NHS Foundation Trust
City only
Sheffield, England
Liverpool University Hospitals NHS Foundation Trust
City only
Liverpool, England
The Newcastle upon Tyne Hospitals NHS Foundation Trust
Unverified
Newcastle upon Tyne, England

Common questions

What is silicosis?

Silicosis is a serious lung disease caused by breathing in tiny silica dust particles, leading to lung scarring and breathing difficulties.

What is this registry for?

It's a UK list of people with silicosis to help doctors understand the disease better, improve care, and find ways to prevent it.

Do I need extra hospital visits?

No, you won't need any extra hospital visits. All information is collected during your normal clinic appointments.

What if I change my mind about taking part?

You can withdraw from the study at any time by letting your medical team know, and it won't affect your medical care.

Who is running this study?

The study is led by researchers at Imperial College London, with initial funding from Royal Brompton and Harefield Hospitals Charity.

How to find out more

Johanna Feary

j.feary@imperial.ac.uk +44 207 5947968 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.