RecruitingObservational

Investigating topical steroid withdrawal: a newly recognised medical condition

This study is investigating Topical Steroid Withdrawal (TSW), a newly recognised condition that can happen to some people after stopping long-term use of steroid creams for eczema. Many people in the UK use these creams, but TSW is not well understood. This research aims to find out how widespread TSW is, what causes it, and how it might be treated. Researchers will ask up to 1000 UK residents who have experienced TSW to fill out an anonymous online survey. A small number of these participants, and some healthy volunteers, may also be invited to provide saliva, blood, and skin samples. By collecting this information, the study hopes to reduce the confusion and worry around TSW and improve support for those affected.

At a glance

Status

Recruiting

Enrolment target

1,050

Start

01 Dec 2025

Estimated completion

02 Nov 2026

Topical steroid withdrawal (TSW)

What is this study about?

This study is a really important step towards understanding Topical Steroid Withdrawal (TSW), which is a condition that some people experience after stopping long-term use of steroid creams (called topical corticosteroids) for skin conditions like eczema. Millions of steroid cream prescriptions are given out in the UK each year, and while they are very helpful for many, a growing number of people have reported severe and sometimes long-lasting skin problems and other health issues when they try to stop using them. These problems can include intense itching, red skin, peeling, pain, and even issues with sleep, mood, and body temperature.

The main goal of this research is to learn more about TSW, as currently, doctors and scientists don't know enough about it. There aren't clear ways to diagnose TSW or specific guidelines for how to treat it. This lack of information has sadly led to a lot of worry and frustration for patients and even some healthcare professionals. This study is the first large-scale research of its kind in the UK, aiming to gather detailed information from a wide range of people who have experienced TSW.

Specifically, the study wants to answer three key questions: How many people in the UK are affected by TSW? What are the biological changes happening in the body that cause TSW? And could TSW be treated effectively? By collecting information through online surveys and, for some, biological samples like saliva, blood, and skin, the researchers hope to shed light on these questions. This will help doctors better understand, diagnose, and eventually improve care for people with TSW, and hopefully reduce the stigma and anxiety around the condition.

Key takeaways

This study focuses on understanding Topical Steroid Withdrawal (TSW).
It aims to gather information from up to 1000 UK residents with TSW via an online survey.
A small number of participants may also provide saliva, blood, and skin samples.
The goal is to learn how common TSW is, what causes it, and how to treat it.
Your participation will help improve knowledge and care for others with TSW.

Who may be eligible?

To take part in the main online survey, you need to be an adult (18 years or older) living in the UK who has experienced Topical Steroid Withdrawal (TSW) at some point, whether you are going through it now or have recovered. You also need to be able to understand the study information and agree to take part in writing.

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?
Do you live in the UK?
Have you experienced Topical Steroid Withdrawal (TSW) at any point?
Can you give informed consent in writing?

Answer every question to see your result.

What does participation involve?

If you decide to take part, the first step is to complete an online survey. This survey will ask you about your experience with TSW and will be available for up to six months, or until 1000 people have completed it. This part of the study is anonymous, meaning your name won't be linked to your answers unless you choose to provide it later.

At the end of the survey, you'll have the option to express interest in providing biological samples (like saliva, blood, or skin). If you agree, the study team will check your survey answers to make sure you meet specific TSW criteria. If you do, you'll be sent more detailed information to decide if you want to donate samples. For samples, a small number of people (up to 50 for saliva, and 3 for blood and skin) will be chosen. Healthy volunteers will also be asked for saliva samples.

Providing a saliva sample is often done at home by spitting into a tube. If you're asked to give a blood sample and a small skin sample (biopsy), this would happen at a hospital. The blood sample involves taking a small amount of blood from your arm, and the skin biopsy is a tiny piece of skin taken after a local anaesthetic injection, which means the area will be numbed. The skin biopsy site will be closed with tiny stitches that dissolve over time. After providing samples, there is no further follow-up required from you for this study.

Potential risks and benefits

There are no direct personal health benefits for you from taking part in this study. However, the information you provide will be very valuable in increasing our understanding of TSW, which could lead to better ways to diagnose and treat the condition in the future. For most participants completing only the survey, there are no known risks. If you donate blood, there's a small chance of bruising, similar to any blood test. For a skin biopsy, you might feel a small sting from the numbing injection, and there will be a tiny scar, some temporary discomfort, and you'll need to avoid heavy exercise for about a month while it heals. The risk of infection is very low. Remember, you can change your mind and withdraw from the study at any time without giving a reason, and it won't affect your medical care.

Locations (1)

University of Edinburgh
Approximate
Edinburgh, United Kingdom

Common questions

What is Topical Steroid Withdrawal (TSW)?

TSW is a severe reaction that some people experience after stopping long-term use of steroid creams (topical corticosteroids) for conditions like eczema.

Why is this study important?

It's the first large UK study to understand how many people are affected by TSW, what causes it, and how it might be treated, as there's currently not enough known about the condition.

Do I have to give samples if I do the survey?

No, completing the online survey is separate. You can choose to opt-in for more information about donating samples, but it's completely your choice.

Will my GP be told I'm in the study?

The study does not collect your GP's details. If you donate blood and a skin biopsy, you'll receive a letter which you can choose to share with your GP if you wish.

When will the results be available?

The study is expected to run from September 2025 to November 2026, so results would likely be shared after that time.

When does recruitment close?From the study team

We will close recruitment when we have 1000 complete responses or on 1st July 2026 - whichever occurs first.

How to find out more

Prof Sara Brown

sara.brown@ed.ac.uk +44 (0)131 651 8734 Official trial record

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