Epidermolysis Bullosa in Australia and New Zealand - 05/08/11

Doi : 10.1016/j.det.2010.02.009

Dédée F. Murrell, MA, BMBCh, FAAD, MD
Department of Dermatology, St George Hospital, University of New South Wales, Gray Street, Sydney, NSW 2217, Australia

Résumé

This article describes the clinical services for EB in Australia and New Zealand. The history and epidemiology of EB in Australia is described. Current treatment and research achievements are described.

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Keywords : Epidermolysis bullosa, Dystrophic epidermolysis bullosa, Epidermolysis bullosa simplex

Plan

Australasian EB registry

Provision of care

Research and teaching about EB

Dystrophic EB

EB Simplex

Junctional EB

Squamous cell carcinoma

Quality of life

Novel treatments for EB

Cultured Keratinocyte Skin Substitutes

Dressings and Wound Care

Allogeneic Fibroblast Cell Therapy for RDEB

Flightless Inhibitors

Collaboration with DebRA Australia and New Zealand

International collaboration

Funding has been provided by the St George Hospital for salary support for clinical time at St George Hospital and Sydney Children’s Hospital with epidermolysis bullosa (EB) patients. Premier Dermatology Clinical Trials, Kogarah, for salary support for EB nurse and research staff. University of New South Wales for medical students and scholarships for Masters of Science and PhD students.

Much of this work was supported by feeder grants from DebRA Australia, DebRA New Zealand and DebRA in New South Wales, South Australia, Victoria and Queensland. Premier Dermatology Clinical Trials have supported salaries and conference expenses for fellows and researchers Eleni Yiasemides, Linda Martin, Niken Trisnowati, Ningning Dang, Matt Kemp, Adam Rubin, Becca Cummins, Anna Liza Agero, Wenfei Yan, Supriya Venugopal, and Lizbeth Intong, and medical students John Frew, Julien Lahmar, Mary Alice Nading, Yong Kho, and EB nurse Lesley Rhodes. Support from SEALS, Anatomic Pathology, St George Hospital, Sydney, for the national EB diagnostic laboratory and the molecular diagnostic laboratory at Royal Brisbane Hospital, Brisbane, for storage and assistance with genetic testing and prenatal diagnosis.