The Time is Now:Achieving FH paediatric screening across EuropeThe Prague Declaration – summary

The Time is Now:
Achieving FH paediatric screening across Europe
The Prague Declaration – summary

This is a summary of the key points of the Prague Declaration on Achieving FH Paediatric Screening across
Europe following the Czech EU Presidency meeting on FH Paediatric screening at the Czech Senate in Prague
on 6th September 2022. The full text of the Declaration can be found here.
Familial Hypercholesterolaemia (FH) is the most common inherited metabolic disorder in the world and is a
major risk factor for cardiovascular disease, affecting approximately 1 in 300 individuals. It cannot be
eliminated by diet and exercise and leads to premature cardiovascular diseases including heart attacksin those
Significantly, it is also under-diagnosed and under-treated. In Europe, there are over 500,000 children and
2,000,000 adults affected by FH, but only 5% of these children have been identified and only a small fraction
of all affected individuals receives life-saving treatment. In addition, there is a very severe and rare variant,
Homozygous FH (HoFH) which can cause heart disease in early childhood. Treatment that begins early in life
is highly efficacious in preventing cardiovascular disease in these individuals, so cost-effective123
, early
detection of FH is crucial.
The Prague Declaration is a call to action addressed to national and European Union policymakers and
decision-makers. It builds on a considerable body of evidence which was discussed at last year’s Technical
Meeting under the auspices of Slovenian EU Presidency4 5
. The Prague meeting built on this and specifically
dealt with removing the outstanding barriers to the systematic implementation of FH paediatric screening
across Europe and the practical actions needed to move forward.
The FH Europe Community calls for

  1. Political leadership and commitment to make FH paediatric screening a reality
    National political leaders should commit to deliberate and bold efforts to make FH paediatric screening a
    reality in their country, acknowledging the unequivocal scientific evidence base, cost effectiveness analyses
    and a children’s and citizens’ rights perspective, in the spirit of leaving no-one behind.
    1 https://pubmed.ncbi.nlm.nih.gov/29937236/
    2 https://pubmed.ncbi.nlm.nih.gov/32526542/
    3 https://pubmed.ncbi.nlm.nih.gov/28387827/
    4 https://academic.oup.com/eurheartj/article-abstract/43/34/3209/6578706
    5 https://academic.oup.com/eurjpc/advance-article/doi/10.1093/eurjpc/zwac200/6691825
    This must lead to a multi-stakeholder approach to ensure that health systems can integrate FH paediatric
    screening cost-effectively. This includes enablers such as digitalisation, responsible health data sharing and
    health care professional education.
  2. Investment and a policy framework for raising awareness of FH amongst medical
    practitioners and the public, to build trust and responsiveness
    National governments in the EU should mobilise the required investment and create appropriate policy
    guidance to raise awareness amongst the public and physicians about FH and associated risks, applying the
    latest knowledge about personalised prevention, behavioural science, health literacy and the social
    determinants of health.
    Awareness-raising campaigns and initiatives will need meaningful engagement of patient organisations,
    healthcare professionals (HCPs) and citizens.
  3. Comprehensive early detection, screening, diagnosis and life course care programmes
    in every country
    Every country should establish systematic early detection screening and diagnosis for FH, with an appropriate
    care programme focused on childhood identification and treatment in accordance with the organisational
    structure and practices of its health care systems.
    The programme should be aligned with the “Best Practices on How to Establish a Screening Programme”
    6 7and
    in particular, to those defined by the European Commission´s public health best practice portal for FH8
    A network of lipid referral centres should coordinate screening and promote family-based care.
    Lipid referral centres should be guided by the experience of European Reference Networks and the European
    Atherosclerosis Society Lipid Clinics Network9
    Each screening programme should be based initially on cholesterol testing, but FH genetic testing must be
    made available for the minority identified as at risk.
  4. Specific actions to address the barriers to successful large-scale uptake of screening
    programmes and subsequent treatment
    Positive action is needed to ensure the success of screening, including public information campaigns and
    personalised health advice. It is also important to ensure that a positive diagnosis has no adverse effects on
    access to treatment for patients and their immediate families.
    Cost-benefit models should be developed that can be tailored to specific national scenarios to show the longterm cost advantages of FH screening as well as the benefits to individual citizens and their families of early
  5. Targeted R&D to address knowledge gaps
    Despite the important work achieved to date, more needs to be done to complete the picture. This includes:
    • new methods for early identification, diagnosis, personalised treatments and follow-up
    • registries that document FH care, monitor progress and measure health outcomes. These should be
    developed in the context of the European Health Data Space and the European Reference network
    and in conjunction with the international FH registry.
    6 https://pubmed.ncbi.nlm.nih.gov/30270075/ (best practice in Slovenia)
    7 https://pubmed.ncbi.nlm.nih.gov/26115072/(best practice in the Netherlands)
    8 https://webgate.ec.europa.eu/dyna/bp-portal/practice.cfm?id=390
    9 https://www.eas-society.org/page/lcn_main
    10 https://www.eas-society.org/page/fhsc_registry
    • long-term clinical trials (3–5 years) and longitudinal studies in children and young people to further
    assess health outcomes, complications, cost-effectiveness, affordability and feasibility.
    • implementation studies to facilitate guideline-based FH care and assess citizen satisfaction with
    • innovation in personalised prevention and treatment in FH
  6. Building the capacity of healthcare professionals and empowering patients on how to
    best support individuals and families with FH
    Appropriate training materials should be created for healthcare professionals and patients and their families,
    to better deal with the pathology and its burden. These needs to be embedded in professional education.
    Dialogues should take place between patients and professionals to discuss the latest advances and evidence
  7. Commitment to shared learning and monitoring through international exchange and
    comparisons both inside and outside the EU
    Through funding programmes such as EU4Health, there should be investment in the transferability and uptake
    of best practice models of FH paediatric screening from other countries, including country-level ‘score cards’
    to measure progress according to efficacy, safety, cost and cost-effectiveness, organisational, ethical, legal and
    social criteria.
    The implementation of FH paediatric screening should be carefully observed and documented for analysis in
    the context of wider efforts towards better cardiovascular health (CVH) through collaboration with relevant
    national, European and Global alliances.
    We invite central, national and regional policymakers across the EU,
    medical societies, patient and public health organisations, and individual
    experts to support this declaration and to help ensure that FH Paediatric
    Screening becomes a reality in Europe, as part of European and national
    strategies to prevent cardiovascular diseases, and to promote
    cardiovascular health.

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