FONDAZIONE REB ONLUS
Research - Milan, Lombardy, Italy
FONDAZIONE REB ONLUS Employees
FONDAZIONE REB ONLUS Senior Management
FONDAZIONE REB ONLUS Details
The EB Registry Foundation (REB) is a moral entity whose mission is to foster scientific and medical research towards the cure of EB. It was established by all Italian families touched by EB. EB is caused by genetic mutations that compromise proteins responsible for skin and dermis adhesion. In children and affected people, the strands of anchoring filaments between the two layers are absent and any action generating minimal friction, such as rubbing or pressure, causes painful bladders and sores throughout the body. To date, there is no cure for EB and the care of children affected requires extreme caution to avoidthat even a gentle touch results in a painful trauma. Because of the fragility of their skin, babies with EB are also called butterfly children.Knowledge of EB and the development of effective therapies are slowed down by the lack of information about the disease, the fact that patients are a few and are based in different regions and cities compared to a few specializedcenters for their care, and by the impossibility of carrying out clinical studies on sub-populations of patients with specific characteristics. Having a Registry not only allows for the systematic and prospective collection of all people with EB, thus paving the way for future clinical trials, but also makes it possible to start standardized treatments with a significant impact on the quality and prospects of life of patients.The purposes of the EB Registry is to:1. Collect and maintain up-to-date clinical information from all EB people;2. Store patients' personal and clinical information in a safe and secure manner and in compliance with current legislation and the European GDPR;3. Become a tool for new research aimed at treating EB and facilitate the recruitment of the most suitable patients for future clinical trials; 4. Foster collaboration between physicians, researchers and patients and the sharing of information.All main Italian Clinical EB centres are involved.
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