ArticleThe British journal of dermatology2022
The epidemiology of epidermolysis bullosa in England and Wales: data from the national epidermolysis bullosa database.
Article in The British journal of dermatology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 2 of them syntheses that pooled it.
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Who cites it
32 citing papers in PubMed, 2 syntheses or guidelines pooled it, 60 citations in OpenAlex.
- Keratin-associated epidermolysis bullosa simplex: phenotypes and challenges in clinical trials - a narrative review and systematic update.Orphanet journal of rare diseases · 2025Pooled it
- Development and validation of the Iranian Minimum Data Set for Epidermolysis Bullosa: A mixed method approach.PloS one · 2025Pooled it
- Long-Term Safety and Tolerability of Beremagene Geperpavec-svdt (B-VEC) in an Open-Label Extension Study of Patients with Dystrophic Epidermolysis Bullosa.American journal of clinical dermatology · 2025Trial
- Prevalence of Genodermatoses in Finland from 1995 to 2022: A Nationwide Registry Study.Acta dermato-venereologica · 2026Article
- Health-Related Quality of Life of Patients withJournal of market access & health policy · 2026Article
- Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Wound-Healing Effects of Birch Bark and Propolis Extracts on Epidermolysis Bullosa Keratinocytes.International journal of molecular sciences · 2026Article
- Quality of life in children and adults with epidermolysis bullosa: the QoL-REB explorative study.Orphanet journal of rare diseases · 2026Article
- The Role of Biodegradable Temporizing Matrix in Hand Surgery for Paediatric Recessive Dystrophic Epidermolysis Bullosa.Journal of clinical medicine · 2026Article
- Integration of a tele-dermatology model for Epidermolysis Bullosa improves patient outreach: a before and after observational study.Frontiers in digital health · 2026Article
- Rehabilitation Intervention for an Infant with Simple Epidermolysis Bullosa from NICU to Home Discharge: A Case Report.Journal of clinical medicine · 2025Article
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- An International Online Survey on Oral Hygiene Issues in Patients with Epidermolysis Bullosa.Dentistry journal · 2025Article
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- Taking care of patients with recessive dystrophic epidermolysis bullosa from birth to adulthood: a multidisciplinary Italian Delphi consensus.Orphanet journal of rare diseases · 2025Article
- Weekly Intraperitoneal Injection of Tamoxifen in an Inducible In Vivo Model of Junctional Epidermolysis Bullosa Generates Early and Advanced Disease Phenotypes.JID innovations : skin science from molecules to population health · 2025Article
- Consensus statements for the transdisciplinary care of patients with epidermolysis bullosa in South Africa: Part 1.Health SA = SA Gesondheid · 2025Article
- Gene-edited cells: novel allogeneic gene/cell therapy for epidermolysis bullosa.Journal of applied genetics · 2024Review
- Systemic treatment of recessive dystrophic epidermolysis bullosa with mesenchymal stromal cells: a scoping review of the literature and conclusions for future clinical research.The Journal of dermatological treatment · 2024Article
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Authors and funding
11 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe National Health Service (NHS) epidermolysis bullosa (EB) service, established in 2002, offers comprehensive, free care to all patients in England and Wales.
objectivesTo quantify prevalence, incidence and mortality of EB in England and Wales.
methodsDemographic data for patients in England and Wales were collected on a secure electronic database, prospectively from January 2002 to April 2021 and retrospectively for cases prior to 2002. Vital status was verified using central NHS data.
resultsBy March 2021, 2594 individuals were registered, of whom 2361 were living, which yielded a prevalence of 34·8 per million of the population for all EB types [EB simplex (EBS) 17 per million, dystrophic EB (DEB) 10·7 per million, junctional EB (JEB) 1 per million and Kindler EB 0·3 per million]. We recorded 1200 babies with EB born since 2002. The average incidence per million live births for EBS, DEB, JEB and Kindler EB was 32·5, 26·1, 8·9 and 0·9, respectively (total incidence for all types of EB was 67·8 per million). Birth rates fell progressively over the 19-year period for JEB-severe (JEB-S) (r = -0·56) and recessive DEB-severe (r = -0·44) and also for milder types of EB. We observed longer survival in JEB-S over the 19-year period (r
conclusionsIn this study, we provide the first accurate epidemiological data for EB in England and Wales. We believe the observed reduction in birth incidence of severe types of EB reflects an uptake of genetic counselling advice, whereas the reduction in milder types may be due to delayed presentation. A potential small trend towards longer survival of babies with JEB-S may reflect improved multidisciplinary care.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.