Haemophilia, FedEmo’s appeal: “Patient data must be included in the ISS register”
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Also known as the ‘disease of kings’, haemophilia has ‘changed its skin’ and today – according to experts – through a series of prevention and protection strategies, such as prophylaxis with a prolonged half-life factor, periodic joint screening and regular physical exercise and a multidisciplinary approach, it is possible to deal with this pathology and greatly reduce the risk of bleeding, thus preserving a better quality of life. The arrival of 11 gene therapies included in national pharmaceutical handbooks makes control of the disease truly seem like a possible goal. But these scientific advances do not correspond to as many advances in healthcare organization and in particular in the collection of data relating to the pathology. And this is no small matter because numbers – when health is involved – are an integral part of the treatment. The theme of the importance of data on haemophilia and in particular of their confluence in the Registry of Congenital Hemorrhagic Diseases (Mec) is at the center of the XX World Haemophilia Day, which is celebrated on 15 April as part of the conference “I count ! Mec: the pathology register and health data, fundamental knowledge and planning tools”.
What is hemophilia
Hemophilia is a genetic pathology characterized by the inability to produce the adequate level of certain clotting factors. The affected person is thus unable to clot the blood adequately and a simple hemorrhage can become an extremely dangerous event.
Today it is estimated that 400 thousand people suffer from hemophilia in the world. According to the latest report from the Istituto Superiore di Sanità on congenital coagulopathies in 2022, there are a total of 9,784 patients suffering from haemophilia: approximately 30% with haemophilia A, 28.6% with von Willebrand’s disease, 7.2% with haemophilia B and 34.1% with deficiencies in other factors.
FedEmo’s appeal
This year’s World Haemophilia Day aims to draw the attention of institutions, healthcare managers, clinicians, patients and, in general, public opinion to the importance of the data contained in the pathology register for Congenital Hemorrhagic Diseases (Mec) – one of the 15 official pathology registers currently active in Italy – with respect to health planning, research support and efficient management of patient care.
“As FedEmo we make an urgent appeal to the institutions to take action, each within their own specific sphere of competence – declares Cristina Cassonepresident of FedEmo – to ensure that the health data of Italian patients suffering from congenital haemorrhagic diseases, collected by the numerous treatment centers in the country, can flow smoothly and completely into the MEC pathology register held by the Istituto Superiore di Sanità” .
Health and data go hand in hand
But why is data collection so important for patients? “The analysis of real and updated epidemiological data – replies Cassone – is an indispensable tool to guarantee effective and efficient health planning, which reflects directly on the assistance and services provided to patients through the definition of typical planning tools such as the regional diagnostic-therapeutic care plans”.
Therefore, the dissemination of health data contained in the Mec register is useful for effective health planning, but to achieve this objective, correct interaction of the data in the Registry with the clinical information contained in the electronic file of individual patients and with telemedicine activities is needed . If appropriately analyzed and in-depth, the data from the Mec Registry would allow assistance programs to be oriented in a linear way and would make a significant contribution to the formulation of operational tools, such as regional pathology PDTAs.
How data is transmitted
At present, patient data is transmitted anonymously following a request from the ISS, which occurs on an annual basis for both epidemiological and treatment data. “The sending of data – he explains Rita Carlotta Santoro, president of Aice (Italian Association of Haemophilia Centres) – takes place from individual Haemophilia Centres, but not from all, towards the ISS. In some cases they are sent by the Regions, but even in this case not by all. For example, there are regions that, despite having excellent pathology registers, do not send data to the ISS. The problem is that since there are different ways of sending data, which are not constant and not uniform, a lot of data is lost.”
The solution that can turbocharge
Therefore, many factors, such as particularly rigid regional procedures and a lack of uniformity of the IT systems involved in the process, are hindering the Istituto Superiore di Sanità – where the Mec is located – in the collection of data coming from the Hemophilia Centers, preventing the fluidity of the process.
So at what stage is the Mec register and the transfer of data collected by the Haemophilia Centers and the Regions? “So far the response of the Centers for the diagnosis and treatment of haemophilia has been good – records Romano Arcieri of the ISS – even if recently there has been a slight decline in the coverage percentages of some Regions. In recent months the ISS has is activated, with the collaboration of Aice, to take charge of a new application, specifically designed for the collection of data on MECs, to be made available to the Centers and Regions. This step has not yet been completed but we hope to bring it to fruition finished in a short time.”
Valuable data also for the activation of PDTAs
Data on haemophilia, collected in a homogeneous and efficient manner, would constitute a precious source of information for public decision-makers for planning services tailored to the real needs of patients. Without neglecting the important and positive effects on the use of essential health planning tools such as Pdta which, in the case of haemorrhagic diseases, are still absent in many regions. In particular, in the future “the Registry could prove to be a useful tool to respond to new needs and new pathology management scenarios also through new technologies – continues Arcieri – such as telemedicine, which would allow remote monitoring of the patient’s clinical conditions , according to criteria that guarantee continuity of care and therapy”.
The support of the CNEL
The objective of World Haemophilia Day 2024 is, therefore, to identify, with the contribution of the institutions, new operational and coordination methods to relaunch the register tool, ensuring a regular flow of data from all hospital centers and facilities that assist patients Mech.
“The National Council of Economy and Labor (Cnel), the third chamber of the State, in addition to its consultative function – concludes Francesco Riva of the CNEL – can exert a driving force, proposing hearings and organizing projects, in this case with ISS, Aice and FedEmo, to the point of opening a consultation table with the regions and hopefully also submitting the results to Hera, the Authority for the preparation and response to health emergencies”.
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