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Rare diseases, Janssen award for best innovative project to the ’empPAtHy’ group

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The ’empPAtHy’ group of the Bambino Gesù pediatric hospital in Rome and of Aicca-Association of adult congenital heart patients goes the prize for having proposed the best project to ‘Hack for Pah’, the first hackathon aimed at improving the path of patients with hypertension pulmonary arterial, promoted by Janssen Italia in collaboration with Telos Management Consulting. The group proposed the creation of a personalized App for the patient, with sections relating to his information including medical tests and drugs; a pocket card with patient information, containing login credentials for their travel App and management of any emergencies; an App for treating physicians with easily available and transferable information and infographics. The jury evaluated the projects according to three criteria: the degree of innovation, the value for the patient and the simplicity and sustainability. Three teams of doctors and patient associations competed in the 3-day marathon, with the support of experts in the reorganization of healthcare processes and paths who came together in this pilot project started in Lazio with the aim of defining a path for the patient with pulmonary arterial hypertension able to reduce the time for a correct diagnosis and management, both for idiopathic forms, and if secondary expression of diseases such as scleroderma or congenital heart disease. The 3 working tables were composed of medical figures who take charge of the management of the patient with pulmonary arterial hypertension, such as general practitioners, cardiologists, radiologists, pulmonologists, rheumatologists, but also local pharmacists and representatives of patient associations. The table for the idiopathic form of pulmonary arterial hypertension was headed by the Policlinico Umberto I in Rome and by Amip-Association for pulmonary hypertension patients; the table for scleroderma with complications of pulmonary arterial hypertension was led by specialists from the Sant’Andrea University Hospital in Rome with Gils-Italian Group for the fight against scleroderma; the table dedicated to congenital heart disease with complications of pulmonary arterial hypertension was made up of specialists from the Bambino Gesù Pediatric Hospital in Rome with Aicca Pulmonary arterial hypertension – a note recalls – is a rare disease characterized by increased blood pressure in the pulmonary circulation, which leads to a progressive overworking of the right ventricle of the heart and can culminate in heart failure and premature death in the absence of adequate treatment. It affects about 60 out of a million people, of all age groups, with an almost double predominance of cases in women. The data of the international registers indicate on average a ratio of 1.9 women affected for each man and it is estimated that, in Italy, there are about 3 thousand patients. The lack of specific symptoms, especially dyspnoea, causes a diagnostic underestimation with an average period to reach the diagnosis of about 2 years. “At Janssen – says Loretta Mameli, Patient Advocacy Lead of Janssen Italy – we are always at the forefront to respond with our research and our services to the care needs of rare patients and to raise public awareness to know and recognize more diseases such as pulmonary arterial hypertension. To date, advances in the treatment of PAH have brought many benefits to clinicians and patients , but there is still a lot of work to be done. Our goal is to transform Pah into an increasingly manageable long-term condition, finding a cure that can be definitive as soon as possible. At the same time, we dialogue and work with all actors in the system to speed up diagnosis and improve disease management. We are confident that a project like Hack for Pah will lead to results. very positive results for all patients with Pah “.” This initiative has brought together the different souls of health professionals and institutions to focus on possible solutions – underlines Dario Vizza, director of the Pulmonary Hypertension Center at the Department of Cardiovascular, Respiratory, Nephrological Anesthesiology and geriatrics of the Policlinico Umberto I in Rome – The exchange of experience between different realities can help to achieve an early diagnosis thanks to the construction and experimentation of more organized and standardized care pathways at an interdisciplinary level, with the involvement of professionals who intervene in the various phases of the route. I hope that this important pilot project can have a future in many other regions and find more and more innovative solutions at the service of doctors, patients and caregivers. “” The real problem for those affected by pulmonary arterial hypertension is that the disease is not alone. rare, but also very little known, both by doctors and by the general population – highlights Laura Gagliardini, president of Amip – This leads on the one hand to difficulties and delays in diagnosis and on the other to the fact that patients often turn to their doctor when the disease is already in an advanced stage. There are also relatively few medical centers with the specific skills and clinical experience required. This project was born to help disseminate information on the disease and to find the best path for an early diagnosis “.” The hackathon – says Roberto Badagliacca, cardiologist and researcher at the La Sapienza University of Rome – was a very positive experience that demonstrates how exchanging ideas, experiences and different methodologies in real time by the various actors involved in the management and treatment of pulmonary arterial hypertension leads to excellent results. Defining a path for the patient, both with an idiopathic form and secondary expression of diseases such as scleroderma or congenital heart disease, is essential in order to reduce the average period to reach the diagnosis, which for the idiopathic form is currently about 2 years, and therefore being able to start early treatment and improve the care experience “.” We must always challenge ourselves to improve – concludes Paolo Ciani, vice president of the Health Commission and president of the Covid Commission, Lazio Regional Council – We must improve the care of patients with diseases rare such as pulmonary arterial hypertension to make it effective and efficient. With the pandemic, many aspects of health and social life have been disrupted and also the models of taking care of patients who, it must be remembered, are first and foremost people. It is very important to involve patient associations because they live the problems directly and this hackathon was a very instructive example of co-planning in the health sector “.

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