PERFECTO stands for “Preventing the Preventable – Familial Hypercholesterolaemia Paediatric Screening for Cardiovascular Health.” This project is focused on childhood screening programs for inherited high cholesterol, which runs in families. These programs help detect this serious cardiovascular disease (CVD) risk factor early, which can prevent premature heart attacks and other serious health complications. By implementing simple healthy living habits such as a healthy, low-fat diet, physical activity, and avoiding smoking, FH can be managed day-to-day alongside medication, promoting overall cardiovascular health (CVH).
Familial hypercholesterolaemia (FH) is the most common genetic cardiovascular risk factor globally. Because it is inherited, it is passed on within families. It is estimated that one in 300 people has inherited high cholesterol, which translates to two million adults and five hundred thousand children being affected in Europe alone. If FH is diagnosed and managed early in childhood, individuals can have a normal life expectancy. However, the identification of FH is very low, with nine out of ten people remaining undetected. This means that approximately 90% of individuals with FH are still undiagnosed, living with a significant risk of developing premature cardiovascular disease.
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The main objective of PERFECTO is to advance the implementation of FH Paediatric Screening across Europe. The project aims to create an enabling and supportive environment, focusing particularly on countries where the burden of cardiovascular disease is the highest and awareness of FH is low among broader stakeholders. PERFECTO seeks to provide tangible evidence on the positive societal impact of preventive measures through FH Paediatric Screening on individuals and their families, population health, and health systems.
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The PERFECTO consortium comprises five partners: EuroScan network for HTA (Germany), Centre for Innovation in Medicine (Romania), Cyprus University of Technology (Cyprus), European Public Health Alliance (International), and is led by FH Europe Foundation (Netherlands), a non-profit patient organization. The consortium is supported by a Scientific Exchange Group, a Multi-disciplinary Reflection Group, and a Health Economics Expert Group. Additionally, experts from Ukraine and Bulgaria are involved.
PERFECTO will carry out its activities through five Work Packages (WPs), generating interdisciplinary insights and practical knowledge to advance tailored communication and awareness-raising efforts from the citizen to policy-level advocacy. Ultimately, the project aims to contribute to the implementation of best practices for FH paediatric screening in EU Member States and to the reduction of the cardiovascular disease burden and health inequity.
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PERFECTO is designed with a true patient and citizen-driven approach, incorporating a strong capacity-building element for multiplication in countries and population groups in need. It leverages the existing Patient Ambassadors Programme and supports further development of patient advocates' education and health literacy efforts.
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PERFECTO is co-funded by the European Union as part of the successful proposals for EU action grants in the field of health under the EU4Health Programme (EU4H). Specifically, it falls under the EU4H-2022-PJ-11 call for proposals on non-communicable diseases (NCDs), focusing on cardiovascular diseases and diabetes (DP-g-22-06.04). For more details, you can find the official call for proposals including the background and policy context here.
The views and opinions expressed are those of the authors only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.
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