LifeArc and DEBRA UK to partner in multi-million drug repurposing trial

This EB Awareness Week, we are pleased to update you on an exciting new research development on our journey to securing effective treatments for all forms of EB.

LifeArc and DEBRA UK have provisionally agreed to support a new multi-million-pound, multi-stage drug repurposing trial in EB.

This new 5-year project, known as the ART (Advancing Repurposed Therapeutics) EB trial, will be the single largest investment to date in global EB research.

ART-EB is an innovative clinical trial designed to test whether drugs already in use for conditions such as psoriasis and eczema, could also be used to treat EB. These drugs target some of the immune signals thought to be involved in the inflammation that plays a major role in EB.

By repurposing these drugs for EB, the trial aims to:

• Speed up access to treatments for all forms of EB
• Reduce costs and risks
• Improve wound healing and quality of life
• Provide a blueprint for running drug repurposing clinical trials in EB

ART-EB will use an innovative approach to clinical trials that enables multiple drugs to be tested at the same time and two different phases of the trial to be completed within the same study.  Because the drugs used in the study are already approved for use in other conditions, the trial can start at phase 2, which will involve the following:

• Recruited patients will be matched to one of up to three drugs. This will be decided based on the results of a skin biopsy, which will be tested for different molecules involved in inflammation.
• The trial will then test which of the drugs are effective at reducing inflammation and improving skin health.
• Any treatments which don’t work will be dropped from the trial and replaced with a new drug, any promising treatments will move on to the next stage (phase 3) to be tested in more people. This will help confirm the benefits and whether they are better than current treatments.

Dr Su Lwin will lead this project at Guy’s and St Thomas’ NHS Foundation Trust (GSTT) and King’s College London (KCL). The project will begin in November 2025, and patient recruitment will begin once the drugs being tested are ready. We anticipate this being in early 2027.

Commenting on this new research development, Dr Su Lwin said:

“I am thrilled and deeply grateful to receive this funding award from LifeArc and DEBRA UK for ART-EB. By mapping the immune landscape of all forms of EB for the first time, we are opening the door to precision medicine and repurposed therapies that could transform an untreatable rare disease into one we can understand, target, and ultimately heal.

“This project represents hope — built on collaboration, innovation, and the shared determination to improve the lives of people with EB.”

DEBRA UK CEO, Tony Byrne said:

“We are delighted to have agreed this groundbreaking new research partnership with Dr Su Lwin and LifeArc. Effective treatments for all forms of EB are the no.1 priority for the EB community and this new project, the largest single investment yet in EB research, could develop a clinical trial platform that can test 3 different drugs at the same time whilst also supporting future EB clinical trials. On the behalf of DEBRA UK and the EB community, I would like to thank LifeArc and Dr Lwin for their commitment to this project and to improving quality of life for people living with all forms of EB. I would also like to thank our many supporters who have helped contribute vital funding”.    

Karen Skinner, Chief Operating Officer at LifeArc, said:

“We are delighted to support the ART-EB trial, a project which exemplifies LifeArc’s commitment to accelerating scientific innovation that delivers real impact for patients. By repurposing existing drugs, ART-EB offers a faster, more cost-effective route to treatments that could significantly improve wound healing and quality of life for people living with EB. Collaboration is at the heart of this effort – by working together with DEBRA UK, Dr Su Lwin, and the wider EB community, we can move faster and bring more than hope to those living with EB.”

As with all EB clinical trials, if you are interested in participating you will need to speak to your doctor, dermatologist or EB clinician for more information about the trial and whether you may be eligible to join it.

For information about EB clinical trials, please visit our clinical trials page.