Recessive dystrophic epidermolysis bullosa
MONDO:0009179Severe generalized recessive dystrophic epidermolysis bullosa (RDEB-sev gen) is the most severe subtype of dystrophic epidermolysis bullosa (DEB), formerly known as the Hallopeau-Siemens type, and is characterized by generalized cutaneous and mucosal blistering and scarring associated with severe deformities and major extracutaneous involvement.
Also known as: EBD inversa, RDEB generalisata gravis, RDEB, Hallopeau-Siemens type, RDEB-sev gen, autosomal recessive dystrophic epidermolysis bullosa generalisata gravis, autosomal recessive dystrophic epidermolysis bullosa, Hallopeau-Siemens type, epidermolysis bullosa dystrophica, AR, epidermolysis bullosa dystrophica, autosomal recessive, modifier of
21 clinical trials for this condition and its sub-types.
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New cream could help kids with 'Butterfly Skin' heal faster
Disease control Recruiting nowThis phase 3 trial tests whether a cream called SD-101 can help close wounds in children with epidermolysis bullosa (EB), a condition that causes fragile, blistering skin. About 80 children aged 1 month to 12 years will apply the cream or a placebo to their whole body for 2 month…
Phase: PHASE3 • Sponsor: Paradigm Therapeutics • Aim: Disease control
Last updated Aug 15, 2026 00:00 UTC
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Gene therapy for 'Butterfly Skin' disease tracked for 15 years in major safety registry
Disease control Recruiting nowThis registry follows people with recessive dystrophic epidermolysis bullosa (RDEB) who have been treated with prademagene zamikeracel, a gene therapy made from their own skin cells and surgically applied to wounds. The study monitors long-term safety and wound healing durability…
Sponsor: Abeona Therapeutics, Inc • Aim: Disease control
Last updated Jul 16, 2026 00:00 UTC
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New combo therapy aims to heal wounds in rare skin disease
Disease control Recruiting nowThis study tests whether adding IV IgG treatment to standard VYJUVEK therapy can help wounds heal faster and reduce blistering in people with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic skin condition. Eight participants will receive IV IgG alongside their u…
Phase: PHASE1, PHASE2 • Sponsor: M. Peter Marinkovich • Aim: Disease control
Last updated Jun 27, 2026 12:29 UTC
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Gene therapy gel aims to stop skin cancer from coming back in RDEB patients
Disease control Recruiting nowThis phase 2 trial tests whether a gene therapy gel called BVEC can reduce the return of squamous cell carcinoma (a type of skin cancer) in people with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic condition that causes fragile, blistering skin. The gel is app…
Phase: PHASE2 • Sponsor: Stanford University • Aim: Disease control
Last updated Jun 27, 2026 12:09 UTC
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Lab-Grown skin patch could heal wounds in 'Butterfly Children'
Disease control Recruiting nowThis study tests a new skin graft made from a patient's own cells, genetically modified to produce a missing protein. It aims to safely heal wounds in 9 people with recessive dystrophic epidermolysis bullosa (RDEB), a rare disease that causes fragile, blistering skin. The graft i…
Phase: PHASE1, PHASE2 • Sponsor: CHU de Quebec-Universite Laval • Aim: Disease control
Last updated Jun 27, 2026 11:02 UTC
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New eye drops aim to ease painful corneal scratches in rare skin disease
Disease control Recruiting nowThis study tests an eye drop called KB803 in 16 people aged 6 months and older with dystrophic epidermolysis bullosa (DEB), a rare genetic condition causing fragile skin and recurrent corneal abrasions. Participants will receive both KB803 and a placebo in random order to see if …
Phase: PHASE3 • Sponsor: Krystal Biotech, Inc. • Aim: Disease control
Last updated Jun 27, 2026 11:01 UTC
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Stanford launches study to better understand rare blistering skin disease
Knowledge-focused Recruiting nowThis study is screening people with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic disease that causes painful blisters and open wounds from minor skin contact. Researchers at Stanford want to learn more about the disease and the patients' cells to develop new …
Sponsor: Stanford University • Aim: Knowledge-focused
Last updated Jun 27, 2026 12:23 UTC