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Recommended Strategies for Epidermolysis Bullosa Management in Romania
Carmen Maria SALAVASTRU, Eli SPRECHER, Mihaela PANDURU, Johann BAUER, Caius Silviu SOLOVAN, Virgil PATRASCU, Horia Silviu MORARIU, Anca TUDORACHE, Torello LOTTI, Irene TAGLIENTE, Annalisa CIASULLI, Maria Rosaria MARCHILI, Giuseppe SABATINO, Erika BURCIU, Rodica COSGAREA, Klaus FRITZ and George-Sorin TIPLICA
ABSTRACT
Background: There are 72 families with epidermolysis bullosa (EB) in Romania. Since 2012 a National Program for the treatment of these patients is run by the Ministry of Health.
The objectives of the strategies for EB patients are to optimize the management (diagnosis, treatment, monitoring) and to provide actual information on classification and patho-physiology which dictate the course of the disease.
Methods: An international expert panel of specialists produced by consensus the recommendations for the management of EB cases in Romania taking into account the local possibilities. Patient association proposals were included. A review of the literature was performed to up-date the information.
Outcomes: A strategy for diagnosis, treatment and follow-up of the patients with EB was elaborated in clear steps. Pharmacological treatments and wound care indications are provided together with a useful score for patient evaluation.
Conclusion: These recommended strategies are allowing dermatologists to generate an individualized care plan for patients with EB.
Keywords: epidermolysis bullosa therapy, epidermolysis bullosa monitoring, dressings, wound care