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Description
This project leads to the reduction of the social and economic disparities of the target group and to the consolidation of bilateral relations on the internal market of the European Economic Area, by implementing in Romania an early diagnosis program for the family of patients already known to have hemophilia and accessible to people belonging to vulnerable communities, including the uninsured and the Roma, the professional training of medical and laboratory staff and the organization of an extensive information and awareness campaign.The proposed project contributes to the social inclusion of people with hemophilia or rare coagulation diseases from vulnerable groups, including uninsured people and Roma, identified as one of the general priority objectives of the Financial Mechanism European Economic Area (EEA) 2014-2021, by providing a service equitable, sustainable and free medical care that allows early diagnosis of genetic hemophilia and rare coagulation diseases, early therapeutic intervention and significant reduction of the medical and social costs involved in the care of a late diagnosed patient. At the same time, the project directly responds to the objectives of the European Strategy for increasing the standard of living, considering that Romania is still one of the European countries with the highest level of poverty.The general objective of the project: Improving mobile health services in isolated areas with a vulnerable population, especially for the uninsured, by developing and implementing a diagnostic program for hemophilia and rare coagulation diseases for the benefit of the project''s target group, while ensuring the achievement . the goal pursued by the financier.
Summary of project results
Blood coagulation screening and genetic testing are testing procedures for the diagnosis of blood coagulation defects, characterized by hemophilia or other rare coagulation diseases. The life expectancy of people diagnosed with hemophilia or other rare coagulation diseases varies depending on the severity of the disease, the lifestyle adopted and access to appropriate treatment. The present project leads to the reduction of social and economic disparities of the target group and the consolidation of bilateral relations on the internal market, by implementing in Romania an extensive program for early diagnosis of the family of patients already known to have hemophilia belonging to vulnerable communities, isolated communities, including uninsured people and Roma, professional training of medical and laboratory personnel and the organization of a broad information and awareness campaign.
The overall objective of the project is to improve mobile outreach health services and ensure equitable access to healthcare for vulnerable groups in isolated communities, including uninsured people and Roma, by developing and implementing an extensive genetic screening and testing program for the benefit of the project''s target group, while ensuring the achievement of the goal pursued by the financier.
The proposed project contributes to the social inclusion of people with hemophilia or rare clotting diseases from vulnerable groups, including uninsured people and Roma, by providing an equitable, sustainable and free medical service that allows for early diagnosis of genetic hemophilia and rare clotting diseases, early therapeutic intervention and a significant reduction in the medical and social costs involved in caring for a late-diagnosed patient. At the same time, the project directly responds to the objectives of the European Strategy for Increasing Living Standards, given that Romania is still one of the European countries with the highest poverty levels.
The implementation of the project is also relevant to the existing national priorities in the National Health Strategy 2014-2020: "Reducing the rate of increase in morbidity and mortality from non-communicable diseases and reducing their burden on the population through national, regional and local health programs of a preventive nature. Therefore, the project interventions represent the expression of the development of a medical system compatible with the sustainable development of public health services and social cohesion, so that people belonging to vulnerable groups, including Roma, can benefit from a medical service that improves their standard of living and facilitates their integration into society.
The purpose of the diagnosis of hemophilia and rare coagulation diseases is to prevent morbidity and mortality through the early detection of this non-communicable genetic disease. Genetic hematological diseases are the rarest, and correct diagnosis can increase life expectancy. In order to improve the quality of life of patients with hemophilia, the main initial aspect is effective diagnosis through classical confirmation, classification tests, prognosis assessment. Genetic testing of affected individuals is also very important. It is important to identify women who may be carriers in this regard, in case of pregnancy. It is very important that future parents who choose prenatal genetic testing understand that hemophilia is not a fatal disease and patients affected by this disorder can live a long life with a good quality of life. Romania continues to be among the countries with high shares of the population at risk due to poverty and social exclusion. Access to primary health, social, and education services is limited for people in rural areas. Regarding unmet health needs in Romania, the most important reasons are financial, especially for people with a low level of education. According to specialized studies, in the category of those with higher incomes, of which Romania is a part, 47.5% of patients suffer from a severe form of hemophilia. In the case of receiving adequate treatment that maintains a level of clotting factors protective in the event of bleeding, the life expectancy of people with hemophilia is 15% lower in severe forms of the disease than in the case of a healthy person and 3 years lower for moderate/mild forms. In the case of Romania, the costs per patient are quite high, moreover Romania has one of the largest vulnerable Roma communities, where access to health services is relatively low. This deficit is mainly important for genetic testing, because the incidence of these genetic diseases is significantly different
Providing preventive health services by implementing a blood coagulation disease diagnosis program and family planning
To date, the procedures for recruiting and selecting the target group, as well as optimizing the sequencing protocols, have been completed. Samples for sequencing were collected from 50 patients diagnosed with hemophilia A
Results
Development of sequencing protocols
Sequencing of 50 patients with hemophilia A, severe or moderate form
Making investments in health infrastructure that contribute to reducing inequalities in the health status of people in isolated areas with vulnerable populations, especially for uninsured people
To date, the tender procedure for the acquisition of the infrastructure necessary for F8 gene sequencing has been completed
Results
The tender for the acquisition of the F8 gene sequencing platform has been completed.
The tender procedure for the acquisition of the Sanger sequencer, respectively the RT PCR device, has been completed.
Professional training of medical personnel
Trainings were organized for medical personnel as follows:
3 members (2 laboratory experts and a resident physician) – National Institute of Hematology – Budapest, Hungary, training in sequencing protocols;
2 members (2 laboratory experts) – University of Milan, Italy, training in laboratory protocols;
2 members (2 hematologists) – World Federation of Hemophilia, Malmo, Sweden, training in health policies in the management of hemophilia patients;
2 members (2 hematologists) – University of Johannesburg, South Africa, in the team of Prof. Mahlangu – training in gene therapies for hemophilia management
1 member (laboratory expert) – International Congress of Transfusion and Hemostasis, Moltreal, Canada – modern diagnostic protocols in hemophilia
Training of 10 specialists
Organization of an information and awareness campaign
Preparation of a meeting with patient associations and treating physicians, in Bucharest, in February 2024
Preparation of organizing a national meeting between patient associations and treating hematologists
Project management
The project manager permanently ensures the collaboration of the other two partners regarding the implementation of the project activities.
In this regard, the 10% co-financing was transferred to the P2 partner, the “Iuliu Hatieganu” University of Medicine and Pharmacy, Cluj Napoca, for the purpose of purchasing the equipment necessary for the implementation of the project activities
Employment contracts were drawn up for the members of the project management and implementation team.
The project accounting records were drawn up monthly.
Reports and various situations requested by the Contracting Authority were prepared.
- Development of sequencing protocols;
- Sequencing of 50 patients with hemophilia A, severe or moderate form;
- The tender for the acquisition of the F8 gene sequencing platform was finalized;
- The tender procedure for the acquisition of the Sanger sequencer, respectively the RT PCR device, was finalized;
- Training of 10 specialists;
- Preparation for the organization of a national meeting between patient associations and hematological physicians;
- Employment contracts were drawn up for the members of the project management and implementation team;
- Monthly accounting records of the project were drawn up;
- Reports and various situations requested by the Contracting Authority were drawn up