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Follows people with epidermolysis bullosa using Filsuvez gel for skin cancer

Follows people with fragile-skin epidermolysis bullosa treated with Filsuvez gel over years.

Key facts

Who runs it
Chiesi Farmaceutici S.p.A.
Where
London, United KingdomSee the siteAlso in 5 other countries, 11 sites
Trial code
Registry title
A Study to Assess the Incidence of Skin Cancers in Patients With Epidermolysis Bullosa Receiving Filsuvez
Status
Recruiting
People taking part
170 people, planned
Started
18 Dec 2024
Expected to end
1 Aug 2032
Type of study
Observational, 2 groups
Treatments tested
  • Filsuvez
Record updated
28 September 2026

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for people with dystrophic or junctional epidermolysis bullosa (EB). They get usual care, with or without Filsuvez, and are followed for at least 3 years to see who develops skin cancer.

Sex
All sexes can join.
Disease stage
A confirmed diagnosis of dystrophic EB or junctional EB.

The registry criteria, word for word

Show all 2 criteriaShow less

Who can take part

  • Patients with a confirmed diagnosis of dystrophic EB or junctional EB

Who cannot take part

  • None

Where in United Kingdom

Also in 5 other countries, 11 sites

  • Guy's and St Thomas' NHS Foundation TrustLondon, United KingdomContact: Jemima MellerioTaking people

About the trial

What the trial wants to find out

In patients with epidermolysis bullosa (EB), collagen does not form properly, so their skin is very fragile and blisters easily. Such patients are also at greatly increased risk of developing skin cancers. Filsuvez is a topical gel used to promote healing of skin lesions in patients with certain types of EB. In this observational study, patients with either dystrophic EB (DEB) or junctional EB (JEB) will receive standard of care treatment, whether Filsuvez or something else, and will be followed for a minimum of 3 years. The main purpose is to see if the use of Filsuvez affects the likelihood of developing skin malignancies in these patient populations.

The 2 groups in the trial

  • Patients with dystrophic or junctional EB being treated with Filsuvez

    Patients in this cohort will be receiving treatment with Filsuvez for their EB.

    Treatment: Filsuvez

  • Patients with dystrophic or junctional EB not being treated with Filsuvez

    Patients in this cohort will be receiving treatment other than Filsuvez or no treatment at all for their EB.

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
A Long-term Non-interventional Study to Assess the Incidence of Skin Malignancies in Patients With Dystrophic and Junctional Epidermolysis Bullosa Receiving Treatment With Filsuvez
Plain-language title
Follows people with epidermolysis bullosa using Filsuvez gel for skin cancerGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
28 September 2026