The Immunohematology and Transfusion Medicine of the S. Croce e Carle Hospital in Cuneo was chosen as the only center in Piedmont and one of 7 in Italy to participate in an International Multicenter study together with 15 other countries in the world.
“The study began in recent days – he explains Paola Manzinidirector of the Facility – aims to test a new drug for the treatment of a rare disease called Erythropoietic Protoporphyria which impacts the quality of life of patients affected by it by preventing or greatly reducing the possibility of exposure to light. The new drug, which will be tested on 150 patients from all over the world, promises to allow them to increase their tolerability to light with the possibility of being exposed, without skin damage, for longer times compared to their current possibilities”.
The study, which will last approximately 62 weeks, will be challenging for patients and the staff who will follow them over this long period. In fact, patients are required to make at least 10 full-day visits to the hospital for tests and investigations throughout the duration of the study and to expose themselves to light daily, despite their symptoms, recording the exposures and related symptoms in an electronic diary. and their duration. The staff involved will mainly be that of Immunohaematology but also dermatology, the pharmacy and the translational oncology laboratory will be an integral part of the project with the support of the company’s Clinical Trial Center.
“Our Immunohematology – concludes Dr. Manzini – it is in fact the reference center for Piedmont and Valle d’Aosta for this group of rare diseases and currently follows 9 patients with acute intermittent porphyria, a very serious form of porphyria which puts the very lives of patients who suffer from it at risk ; also treated today at our company with an innovative drug and 6 patients with the form that will be evaluated in this study”.
Livio Tranchidageneral director of the company: “Once again, S. Croce is involved, among the few centers in Italy and in the world, in a complex multicenter study in a very particular area, that of rare diseases. Those affected often do not find solutions to the disease and we are proud to be part, with Immunohaematology which will collaborate with other specialties of the Company, in experimenting with ways to improve the quality of life of these patients.”
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