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Early detection of familial hypercholesterolaemia in children aged 5-14 starts in Lower Saxony

An uncomplicated screening measure can identify affected children and help to improve the diagnosis and treatment situation of FH patients. | © MC Services AG

© MC Services AG - myvroni.de

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Familial hypercholesterolaemia (FH) can lead to serious cardiovascular disease at a young age if left untreated. The "VRONI in the North" study in Lower Saxony offers early detection and counselling for 5 to 14-year-old children with FH and their families. The project, under the scientific direction of DZHK member Prof. Dr Heribert Schunkert, continues the successful concept from Bavaria for the early detection and treatment of FH.

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Under the motto "Heart attack at 35? Not me!", a new chapter in improving heart health begins in Lower Saxony: the 'VRONI in the North' study offers preventive screening for familial hypercholesterolaemia (FH) for children aged 5 to 14 years at the AUF DER BULT children's and youth hospital and at many participating paediatricians in Lower Saxony. Around one in 250 children in Germany is born with this hereditary metabolic disorder. Elevated LDL cholesterol levels lead to arteriosclerosis, whereby deposits form on the vessel walls that initially cause no symptoms. If unrecognised and untreated, this can lead to heart attacks, strokes and vascular occlusions even in middle age. Currently, less than 5% of FH cases are detected in Germany - usually only after a heart attack. VRONI wants to change this - because with early diagnosis and consistent treatment, the otherwise greatly increased risk of a cardiovascular event can be reduced to normal levels.

As part of the U9 to J1 check-ups or any other appointment with a paediatrician, a few drops of blood are taken from children aged between 5 and 14 years, who are then tested for FH in the laboratory. "If the test confirms genetic familial hypercholesterolaemia - or also indicates dangerously high blood lipid levels without FH - we advise the affected children and their families in detail," explains Prof. Dr Olga Kordonouri, Medical Director at the AUF DER BULT Children's and Adolescent Hospital in Hanover. "We provide information about treatment with cholesterol-lowering medication, but also about lifestyle and dietary adjustments. In this way, we can significantly reduce the risk of cardiovascular disease. We also arrange a free examination for FH for family members and, if necessary, further medical counselling. This is because if a child is diagnosed with FH, at least one parent and often other close relatives are carriers of this hereditary disease. This also applies to them - the earlier we recognise and treat FH, the better we can prevent serious secondary diseases."

Success of the VRONI study in Bavaria as a cornerstone

The study draws on the findings and infrastructure of the VRONI study, which has been conducted with great success in Bavaria since 2021. Under the leadership of the German Heart Centre Munich, VRONI has already screened over 17,000 children and identified more than 180 affected families. In most cases, guideline-compliant treatment has already been initiated. "The high awareness and treatment rate in Bavaria shows that there is a great willingness to identify and treat FH at an early stage before avoidable secondary diseases develop. With 'VRONI in the North', we will significantly expand the data available on the early diagnosis of FH," explains Dr Veronika Sanin, head of the VRONI study at the German Heart Centre Munich.

"Combining the data from VRONI and VRONI in the North should form the basis for including FH screening in standard care throughout Germany in the future," explains Prof. Dr Heribert Schunkert, Director of the Clinic for Cardiovascular Diseases at the German Heart Centre Munich, adding: "We are confident that this will enable us to improve the diagnosis and treatment of FH for patients of all age groups. A decisive step towards preventing the development of cardiovascular diseases in high-risk patients at an early stage!"


A training and information event (in German) in hybrid format on 'VRONI in the North' will take place on 14 February 2024 at the children's and youth hospital AUF DER BULT in Hanover. The two-hour kick-off meeting will include an introduction to the topic and helpful tips for participating in the study. Interested parties should contact vroni(at)hka.de by 13 February 2024 with their name and whether they would like to follow the event on site or online. Further information is also available at myvroni.de

Scientific contact: Head of study Prof. Dr Heribert Schunkert and Dr Veronika Sanin, German Heart Centre Munich, mail(at)myvroni.de