Rare diseases, San Croce di Cuneo involved in a study on Porphyria

WEDGE The Immunohematology and Transfusion Medicine of the San 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, which 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 ten 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 immunohematology but dermatology, the pharmacy and the translational oncology laboratory will also be an integral part of the project with the support of the company Clinical Trial Center.


 
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