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EB Clinical Management

Articles

  • Innovations in topical epidermolysis bullosa treatment: integrating advanced dressings, bioactive therapies and tissue-engineered skin
    3 April 2026
    0
    Daru. 2026 Apr 3;34(1):22. doi: 10.1007/s40199-026-00601-5. PMID: 41931158; PMCID: PMC13049120. Innovations in topical epidermolysis bullosa treatment: integrating advanced dressings, bioactive therapies and tissue-engineered skin Authors: Marwah […]
  • Perception of Parents Regarding Oral Health-Related Quality of Life of Children With Epidermolysis Bullosa: A Cross-Sectional Study
    1 April 2026
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    Int J Paediatr Dent. 2026 Apr 1. doi: 10.1111/ipd.70087. Epub ahead of print. PMID: 41919311. Perception of Parents Regarding Oral Health-Related Quality of Life of Children […]
  • Characterisation of the wound microbiome and antimicrobial resistance profiles in clinical isolates from epidermolysis bullosa patients
    7 March 2026
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    Orphanet J Rare Dis. 2026 Mar 7. doi: 10.1186/s13023-026-04295-5. Epub ahead of print. PMID: 41794696 Characterisation of the wound microbiome and antimicrobial resistance profiles in clinical […]
  • Systemic inflammation in recessive dystrophic epidermolysis bullosa: a five-year longitudinal study
    5 March 2026
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    Br J Dermatol. 2026 Mar 5:ljag082. doi: 10.1093/bjd/ljag082. Epub ahead of print. PMID: 41787717 Systemic inflammation in recessive dystrophic epidermolysis bullosa: a five-year longitudinal study Authors: […]
  • Zinc as a Biomarker of Nutritional Status and Clinical Burden in Recessive Dystrophic Epidermolysis Bullosa: Implications for Preventive Monitoring
    12 January 2026
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    Nutrients2026, 18(2), 232;https://doi.org/10.3390/nu18020232 Zinc as a Biomarker of Nutritional Status and Clinical Burden in Recessive Dystrophic Epidermolysis Bullosa: Implications for Preventive Monitoring Authors: Lucía Quintana-Castanedo1,2, Rocío Maseda1, […]
  • An Acid-Oxidising Solution Containing Hypochlorous Acid Reduces Staphylococcus aureus and Improves Bacterial Diversity in Epidermolysis Bullosa Wounds
    2 January 2026
    0
    Exp Dermatol. 2025 Aug;34(8):e70147. doi: 10.1111/exd.70147. PMID: 40803690; PMCID: PMC12349993. An Acid-Oxidising Solution Containing Hypochlorous Acid Reduces Staphylococcus aureus and Improves Bacterial Diversity in Epidermolysis Bullosa […]
  • An Acid-Oxidising Solution Containing Hypochlorous Acid Reduces Staphylococcus aureus and Improves Bacterial Diversity in Epidermolysis Bullosa Wounds
    1 August 2025
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    Exp Dermatol. 2025 Aug;34(8):e70147. doi: 10.1111/exd.70147. PMID: 40803690; PMCID: PMC12349993. An Acid-Oxidising Solution Containing Hypochlorous Acid Reduces Staphylococcus aureus and Improves Bacterial Diversity in Epidermolysis Bullosa […]
  • “It’s like nursing a butterfly-so delicate, difficult, and unpredictable” – challenges of nurses in caring for patients with epidermolysis bullosa: a qualitative study
    23 July 2025
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    Orphanet J Rare Dis. 2025 Jul 23;20(1):371. doi: 10.1186/s13023-025-03925-8. PMID: 40702537. “It’s like nursing a butterfly-so delicate, difficult, and unpredictable” – challenges of nurses in caring […]
  • Efficacy and Safety of the Topical Gene Therapy Beremagene Geperpavec-svdt (B-VEC) in an Open-Label Study of Japanese Subjects With Dystrophic Epidermolysis Bullosa
    16 July 2025
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    J Dermatol. 2025 Jul 16. doi: 10.1111/1346-8138.17863. Epub ahead of print. PMID: 40667654. Efficacy and Safety of the Topical Gene Therapy Beremagene Geperpavec-svdt (B-VEC) in an […]
  • Prevalence of Kidney Complications in a Large Cohort of Patients with Recessive Dystrophic Epidermolysis Bullosa
    15 July 2025
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    Br J Dermatol. 2025 Jul 15:ljaf271. doi: 10.1093/bjd/ljaf271. Epub ahead of print. PMID: 40663638 Prevalence of Kidney Complications in a Large Cohort of Patients with Recessive […]
  • Cross-sectional analysis of wound-associated soluble factors in early, established, and chronic wounds of recessive dystrophic epidermolysis bullosa patients
    4 June 2025
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    Arch Dermatol Res. 2025 Jun 4;317(1):796. doi: 10.1007/s00403-025-04293-w. PMID: 40464793; PMCID: PMC12137523. Cross-sectional analysis of wound-associated soluble factors in early, established, and chronic wounds of recessive […]
  • Staphylococcus aureus Promotes Cutaneous Lesions in Patients With Epidermolysis Bullosa
    1 June 2025
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    Exp Dermatol. 2025 Jun;34(6):e70129. doi: 10.1111/exd.70129. PMID: 40556416. Staphylococcus aureus Promotes Cutaneous Lesions in Patients With Epidermolysis Bullosa Authors: Qin Zeng 1, Shucui Wang 1, Nadira Nurxat 2, Xuemeng Min 3, Yanan Guo 2, Fuying Chen 1, Weitao […]
  • Efficacy and Safety of Rigosertib in Patients with Recessive Dystrophic Epidermolysis Bullosa Associated Advanced/Metastatic Cutaneous Squamous Cell Carcinoma
    29 May 2025
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    Br J Dermatol. 2025 May 29:ljaf205. doi: 10.1093/bjd/ljaf205. Epub ahead of print. PMID: 40439508. Efficacy and Safety of Rigosertib in Patients with Recessive Dystrophic Epidermolysis Bullosa […]
  • Successful Use of Upadacitinib in Treating a Child With Epidermolysis Bullosa Pruriginosa: A Case Report and Literature Review
    22 April 2025
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    Pediatr Dermatol. 2025 Apr 22. doi: 10.1111/pde.15963. Epub ahead of print. PMID: 40263717. Successful Use of Upadacitinib in Treating a Child With Epidermolysis Bullosa Pruriginosa: A […]
  • Taking care of patients with recessive dystrophic epidermolysis bullosa from birth to adulthood: a multidisciplinary Italian Delphi consensus
    16 March 2025
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    Orphanet J Rare Dis. 2025 Mar 16;20(1):128. doi: 10.1186/s13023-025-03635-1. PMID: 40091088; PMCID: PMC11912768. Taking care of patients with recessive dystrophic epidermolysis bullosa from birth to adulthood: […]
  • Milestone events in recessive dystrophic epidermolysis bullosa (RDEB): findings of the PEBLES Study
    28 January 2025
    0
    Clin Exp Dermatol. 2025 Jan 28:llaf009. doi: 10.1093/ced/llaf009. Epub ahead of print. PMID: 39874247. Milestone events in recessive dystrophic epidermolysis bullosa (RDEB): findings of the PEBLES […]
  • Repurposing diacerein for the treatment of chronic wounds in recessive-dystrophic epidermolysis bullosa patients by modulating matrix metalloproteinase-9 expression
    24 January 2025
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    J Dermatol. 2025 Jan 24. doi: 10.1111/1346-8138.17621. Epub ahead of print. PMID: 39853777. Repurposing diacerein for the treatment of chronic wounds in recessive-dystrophic epidermolysis bullosa patients […]
  • Prevalence of Crown Resorption in Amelogenesis Imperfecta due to Junctional Epidermolysis Bullosa
    8 January 2025
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    Oral Dis. 2025 Jan 8. doi: 10.1111/odi.15250. Epub ahead of print. PMID: 39777984. Prevalence of Crown Resorption in Amelogenesis Imperfecta due to Junctional Epidermolysis Bullosa Authors: […]
  • The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients’ perspective
    6 January 2025
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    Orphanet J Rare Dis. 2025 Jan 6;20(1):3. doi: 10.1186/s13023-024-03475-5. PMID: 39762901 The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens […]
  • A Catheter Securement Strategy for Patients with Epidermolysis Bullosa
    29 October 2024
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    Advances in Skin & Wound Care 37(10):p 516-518, October 2024. | DOI: 10.1097/ASW.0000000000000216 A Catheter Securement Strategy for Patients with Epidermolysis Bullosa Authors: Strupp, Kim M. MD; Lee, Amy J. […]
  • Pregabalin for Neuropathic Pain and Itch in Recessive Dystrophic Epidermolysis Bullosa
    23 October 2024
    0
    JAMA Dermatol. 2024 Oct 23. doi: 10.1001/jamadermatol.2024.3767. Epub ahead of print. PMID: 39441591. Pregabalin for Neuropathic Pain and Itch in Recessive Dystrophic Epidermolysis Bullosa Authors: Margarita […]
  • Economic burden and health-related quality of life in patients with epidermolysis bullosa in Spain
    23 September 2024
    0
    Orphanet J Rare Dis. 2024 Sep 23;19(1):352. doi: 10.1186/s13023-024-03328-1. PMID: 39313783; PMCID: PMC11421099. Economic burden and health-related quality of life in patients with epidermolysis bullosa in […]
  • Identification of novel small molecule-based strategies of COL7A1 upregulation and readthrough activity for the treatment of recessive dystrophic epidermolysis bullosa
    16 August 2024
    0
    Sci Rep. 2024 Aug 16;14(1):18969. doi: 10.1038/s41598-024-67398-8. PMID: 39152155; PMCID: PMC11329504. Identification of novel small molecule-based strategies of COL7A1 upregulation and readthrough activity for the treatment […]
  • Rare Disease and Quality of Life: Questionnaire and Indicators on Epidermolysis Bullosa in Italy
    4 August 2024
    0
    Soc Indic Res (2024). https://doi.org/10.1007/s11205-024-03405-9 Rare Disease and Quality of Life: Questionnaire and Indicators on Epidermolysis Bullosa in Italy Authors: Mariani P, Marletta A, Zenga M Affiliation: […]
  • Treatment of Epidermolysis Bullosa and Future Directions: A Review
    2 August 2024
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    Dermatol Ther (Heidelb) (2024). https://doi.org/10.1007/s13555-024-01227-8 Treatment of Epidermolysis Bullosa and Future Directions: A Review Authors: Danescu S 1, Negrutiu M1, Has C2 Affiliation: Abstract: Epidermolysis bullosa (EB) […]
  • Efficacy of aprepitant for refractory pruritus in patients with epidermolysis bullosa and atopic dermatitis: A retrospective study
    25 July 2024
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    Pediatr Dermatol. 2024 Jul 25. doi: 10.1111/pde.15704. Epub ahead of print. PMID: 39049669. Efficacy of aprepitant for refractory pruritus in patients with epidermolysis bullosa and atopic […]
  • Systematic review on antipruritic therapies for patients with Epidermolysis bullosa
    24 July 2024
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    J Dermatolog Treat. 2024 Dec;35(1):2381762. doi: 10.1080/09546634.2024.2381762. Epub 2024 Jul 28. PMID: 39069296. Systematic review on antipruritic therapies for patients with Epidermolysis bullosa Authors: Tobias Welponer 1, Christian […]
  • Epidermolysis Bullosa Pruriginosa treated with baricitinib: A case report
    5 July 2024
    0
    Medicine 103(27):p e38854, July 05, 2024. | DOI: 10.1097/MD.0000000000038854 Epidermolysis Bullosa Pruriginosa treated with baricitinib: A case report Authors: He, Zhe MM1; Dong, Qian MM1; Xi, […]
  • Developing the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES) to explore natural history and identify endpoints for the rare disease recessive dystrophic epidermolysis bullosa
    1 July 2024
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    British Journal of Dermatology, Volume 191, Issue Supplement_1, July 2024, Page i65, https://doi.org/10.1093/bjd/ljae090.131 P104 Developing the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES) to explore natural history […]
  • Milestone events in recessive dystrophic epidermolysis bullosa: findings from a prospective register study
    1 July 2024
    0
    British Journal of Dermatology, Volume 191, Issue Supplement_1, July 2024, Page i49, https://doi.org/10.1093/bjd/ljae090.101 P074 Milestone events in recessive dystrophic epidermolysis bullosa: findings from a prospective register study […]
  • Evaluation of antipruritic effects of serlopitant, a neurokinin 1 receptor antagonist, in patients with epidermolysis bullosa: A phase 2 randomized controlled trial
    1 July 2024
    0
    J Eur Acad Dermatol Venereol. 2024 Jul 1. doi: 10.1111/jdv.20189. Epub ahead of print. PMID: 38949042. Evaluation of antipruritic effects of serlopitant, a neurokinin 1 receptor […]
  • Therapies for cutaneous squamous cell carcinoma in recessive dystrophic epidermolysis bullosa: a systematic review of 157 cases
    21 May 2024
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    Orphanet J Rare Dis. 2024 May 21;19(1):206. doi: 10.1186/s13023-024-03190-1. PMID: 38769503; PMCID: PMC11106883. Therapies for cutaneous squamous cell carcinoma in recessive dystrophic epidermolysis bullosa: a systematic […]
  • Consensus-based Guidelines for the Provision of Palliative Care for People Living with Epidermolysis Bullosa
    12 April 2024
    0
    Orphanet J Rare Dis. 2023 Sep 4;18(1):268. doi: 10.1186/s13023-023-02870-8. PMID: 37667330; PMCID: PMC10476410. Consensus-based Guidelines for the Provision of Palliative Care for People Living with Epidermolysis […]
  • Inpatient Management of Epidermolysis Bullosa: Consensus-Based Hands-On Instructions for Neonates and Post-Neonates.
    9 April 2024
    0
    J Am Acad Dermatol. 2024 Apr 9:S0190-9622(24)00583-8. doi: 10.1016/j.jaad.2024.04.014. Epub ahead of print. PMID: 38604489. Inpatient Management of Epidermolysis Bullosa: Consensus-Based Hands-On Instructions for Neonates and […]
  • Orofacial Anomalies in Kindler Epidermolysis Bullosa
    20 March 2024
    0
    JAMA Dermatol. 2024 Mar 20:e240065. doi: 10.1001/jamadermatol.2024.0065. Epub ahead of print. PMID: 38506824; PMCID: PMC10955352. Orofacial Anomalies in Kindler Epidermolysis Bullosa Authors: Susanne Krämer 1 2, Anna Lena Hillebrecht 3, Yao […]
  • Osteoporosis and bone health in pediatric patients with epidermolysis bullosa: A scoping review
    11 January 2024
    0
    Pediatr Dermatol. 2024 Jan 11. doi: 10.1111/pde.15527. Epub ahead of print. PMID: 38205535. Osteoporosis and bone health in pediatric patients with epidermolysis bullosa: A scoping review. […]
  • Epidermolysis Bullosa
    11 January 2024
    0
    StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan Epidermolysis Bullosa [Updated 2024 Jan 11] Authors: Divya Khanna1; Ajoy Bardhan2 Affiliation: Abstract: No abstract available. Summary: Download: […]
  • Costs of UK community care for individuals with recessive dystrophic epidermolysis bullosa: Findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study
    10 January 2024
    0
    Skin Health Dis. 2024 Jan 10;4(1):e314. doi: 10.1002/ski2.314. PMID: 38312260; PMCID: PMC10831550. Costs of UK community care for individuals with recessive dystrophic epidermolysis bullosa: Findings of […]
  • Neonatal Epidermolysis Bullosa: a clinical practice guideline
    4 January 2024
    0
    Br J Dermatol. 2024 Jan 4:ljae006. doi: 10.1093/bjd/ljae006. Epub ahead of print. PMID: 38175636. Neonatal Epidermolysis Bullosa: a clinical practice guideline Authors: Rebecca Saad 1, José Duipmans 2, Natalie Yerlett 3, Katie […]
  • Efficacy of oral JAK1 or JAK1/2 inhibitor for treating refractory pruritus in dystrophic epidermolysis bullosa: A retrospective case series
    20 December 2023
    0
    J Dermatol. 2023 Dec 20. doi: 10.1111/1346-8138.17079. Epub ahead of print. PMID: 38115742. Efficacy of oral JAK1 or JAK1/2 inhibitor for treating refractory pruritus in dystrophic […]
  • Enhancing Growth in Epidermolysis Bullosa: Nutritional Supplements and Dietary Interventions for Children and Adolescents
    8 December 2023
    0
    Rev Clin Med. 2023;10(3): 32-40 Enhancing Growth in Epidermolysis Bullosa: Nutritional Supplements and Dietary Interventions for Children and Adolescents Authors: Pegah Rahbarinejad (MD)1,2, Fatemeh Sadat Hashemi […]
  • EE553 An Exploratory Study Assessing the Utility Impact in Second Informal Carers of Patients With Epidermolysis Bullosa
    1 December 2023
    0
    Value in Health, December 2023, Volume 26, Issue 12, SupplementS1-S578, ISPOR Europe 2023 Abstracts EE553 An Exploratory Study Assessing the Utility Impact in Second Informal Carers […]
  • Clinical and molecular features in a cohort of Middle Eastern patients with epidermolysis bullosa
    12 October 2023
    0
    Pediatr Dermatol. 2023 Oct 12. doi: 10.1111/pde.15440. Epub ahead of print. PMID: 37827535. Clinical and molecular features in a cohort of Middle Eastern patients with epidermolysis […]
  • Assessing the epidemiological factors of epidermolysis bullosain Shiraz, the referral center of Southern Iran
    15 September 2023
    0
    JCIMCR Assessing the epidemiological factors of epidermolysis bullosain Shiraz, the referral center of Southern Iran Authors: Ali Akbar Mohammadi1,2; Nasrin Saki3,4; Mohammad Mahdi Parvizi4, Amir Hossein […]
  • Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa
    4 September 2023
    0
    Orphanet J Rare Dis. 2023 Sep 4;18(1):268. doi: 10.1186/s13023-023-02870-8. PMID: 37667330. Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis […]
  • Itch in recessive dystrophic epidermolysis bullosa: findings of PEBLES, a prospective register study
    9 August 2023
    0
    Orphanet J Rare Dis. 2023 Aug 9;18(1):235. doi: 10.1186/s13023-023-02817-z. PMID: 37559055; PMCID: PMC10410928. Itch in recessive dystrophic epidermolysis bullosa: findings of PEBLES, a prospective register study […]
  • Epidermolysis bullosa: time to come together for better outcomes
    7 July 2023
    0
    Br J Dermatol. 2023 Jul 7;189(1):5. doi: 10.1093/bjd/ljad123. PMID: 37067920. Epidermolysis bullosa: time to come together for better outcomes Authors: Gabriela Petrof 1, Anna E Martinez 1 Affiliation: Abstract: […]
  • Heterogeneity of reported outcomes in epidermolysis bullosa clinical research: a scoping review as a first step towards outcome harmonization
    7 July 2023
    0
    Br J Dermatol. 2023 Jul 7;189(1):80-90. doi: 10.1093/bjd/ljad077. PMID: 37098154. Heterogeneity of reported outcomes in epidermolysis bullosa clinical research: a scoping review as a first step […]
  • BG04 Oleogel-S10 (birch triterpenes) in the treatment of epidermolysis bullosa wounds: 24-month efficacy and safety data from the EASE study
    4 July 2023
    0
    Keywords: Oleogel-S10, Amryt, Abstract
  • ABSTRACT: Compassionate use of topical beremagene geperpavec (B-VEC) for the treatment of recurrent cicatrizing conjunctivitis in a patient with dystrophic epidermolysis bullosa
    4 July 2023
    0
    Keywords: B-VEC, Krystal, Opthalmology, Gene therapy

Guidelines

  • Consensus-based Guidelines for the Provision of Palliative Care for People Living with Epidermolysis Bullosa
    12 April 2024
    0
  • Inpatient Management of Epidermolysis Bullosa: Consensus-Based Hands-On Instructions for Neonates and Post-Neonates.
    9 April 2024
    0
  • Neonatal Epidermolysis Bullosa: a clinical practice guideline
    4 January 2024
    0
  • Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa
    4 September 2023
    0
  • Consensus guidelines for diagnosis and management of anemia in epidermolysis bullosa
    23 February 2023
    0
  • Stanford Adult Epidermolysis Bullosa Anesthesia Protocol 
    5 September 2022
    0

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