Carmen Maria Salavastru1, Eli Sprecher2, Mihaela Panduru3, Johann Bauer4, Caius Silviu Solovan5, Virgil Patrascu6, Horia Silviu Morariu7, Anca Tudorache8, Torello Lotti9, Irene Tagliente10, Annalisa Ciasulli11, Maria Rosaria Marchili12, Giuseppe Sabatino13, Erika Burciu14, Rodica Cosgarea15, Klaus Fritz16, George-Sorin Tiplica1. 1. Colentina Dermatology Clinic 2, "Carol Davila" University of Medicine and Pharmacy Bucharest, Romania. 2. Tel Aviv Sourasky Medical Center, Department of Dermatology, Tel Aviv, Israel. 3. Medlife Hyperclinic, Bucharest, Romania. 4. Universitätsklinik für Dermatologie, Salzburg, Austria. 5. Dermatology Clinic, "Victor Babeş" University of Medicine and Pharmacy, Timişoara, Romania. 6. Dermatology Clinic, University of Medicine and Pharmacy, Craiova, Romania. 7. Dermatology Clinic, University of Medicine and Pharmacy Târgu Mureş, Romania. 8. Dermatology Clinic 2, "Colentina" Clinical Hospital, Bucharest, Romania. 9. University of Rome "G.Marconi", Rome, Italy. 10. Direzione Scientifica, Area di Ricerca Innovazioni Clinico-Tecnologiche, Ospedale Pediatrico Bambino Gesù, IRCCS, Rome, Italy. 11. Dipartimento di Medicina Pediatrica UOC di Dermatologia, Ospedale Pediatrico Bambino Gesù, IRCCS, Rome, Italy. 12. Dipartimento di Medicina Pediatrica,UOC di Pediatria Generale e Malattie Infettive, Ospedale Pediatrico Bambino Gesù, IRCCS, Rome, Italy. 13. Direzione Scientifica, Area di Ricerca Malattie Genetiche e Rare, UOC Broncopneumologia, Ospedale Pediatrico Bambino Gesù, IRCCS, Rome, Italy. 14. MiniDebra, Cluj, Romania. 15. Dermatology clinic, "Iuliu Hatieganu" University of medicine and Pharmacy Cluj Napoca, Romania. 16. Dermatology Clinic, Landau, Germany.
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.
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.
Entities:
Keywords:
dressings; epidermolysis bullosa monitoring; epidermolysis bullosa therapy; wound care
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