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

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

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

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 pulmonary arterial hypertension, 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 your 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 pathways who came together in this pilot project that 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 – remember a note – is ua 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 people out of a million, of all age groups, with an almost double predominance of cases in women. Data from international registries indicate on average a ratio of 1.9 women affected for each man e it is estimated that, in Italy, there are about 3 thousand patients. The lack of specific symptoms, especially dyspnea, causes a diagnostic underestimation with an average time to reach the diagnosis of about 2 years.