This paper presents an electronic registry system for the purposes of the eENERCA for rare congenital conditions that require lifelong follow up and treatment. The main objective of the eENERCA project focusses on the prevention of major rare anaemias (RAs) by facilitating the access, at a European level, to the best genetic counselling, diagnosis and clinical management of the patients with RA independently of their country of origin. This can be achieved by promoting an extension of the full Electronic Health Record system and specifically the electronic registries for RAs, across Europe for the purposes stated hence promoting service development for the benefit of patients. The proposed eRegistry will serve as an epidemiological tool to improve the management of patient services and ultimately improve patient care.
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