罗马尼亚大疱性表皮松解症管理的推荐策略。
Recommended strategies for epidermolysis bullosa management in romania.
作者信息
Salavastru Carmen Maria, Sprecher Eli, Panduru Mihaela, Bauer Johann, Solovan Caius Silviu, Patrascu Virgil, Morariu Horia Silviu, Tudorache Anca, Lotti Torello, Tagliente Irene, Ciasulli Annalisa, Marchili Maria Rosaria, Sabatino Giuseppe, Burciu Erika, Cosgarea Rodica, Fritz Klaus, Tiplica George-Sorin
机构信息
Colentina Dermatology Clinic 2, "Carol Davila" University of Medicine and Pharmacy Bucharest, Romania.
Tel Aviv Sourasky Medical Center, Department of Dermatology, Tel Aviv, Israel.
出版信息
Maedica (Bucur). 2013 Jun;8(2):200-5.
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.
背景
罗马尼亚有72个患有大疱性表皮松解症（EB）的家庭。自2012年以来，卫生部实施了一项针对这些患者的国家治疗计划。EB患者治疗策略的目标是优化管理（诊断、治疗、监测），并提供有关决定疾病进程的分类和病理生理学的实际信息。
方法
一个由国际专家组成的专门小组经协商一致制定了罗马尼亚EB病例管理建议，同时考虑到当地的可能性。患者协会的提议也被纳入其中。还进行了文献综述以更新信息。
结果
详细阐述了EB患者诊断、治疗和随访的策略步骤。提供了药物治疗和伤口护理指征以及一个用于患者评估的有用评分。
结论
这些推荐策略使皮肤科医生能够为EB患者制定个性化的护理计划。
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