Each year in the Netherlands, 500-800 young adults (18-45) die suddenly and unexpectedly. In many cases, an inherited cardiovascular disease is the underlying cause — yet without post-mortem diagnostics, the cause of death often remains unknown. This uncertainty has major consequences for families. First-degree relatives frequently undergo repeated cardiological screening as a precaution, leading to psychological burden, uncertainty, and high healthcare costs — often without ever confirming whether a hereditary condition is present. Post-mortem diagnostics — including CT imaging, autopsy, toxicology and genetic testing — can provide clarity in 50-75% of cases. This enables targeted prevention for relatives, avoids unnecessary care, and supports the grieving process. Despite this clear societal value, post-mortem diagnostics is not structurally funded in the Netherlands.
At the initiative of the Dutch Society for Clinical Genetics and coordinated by the Dutch CardioVascular Alliance (DCVA), a national multidisciplinary working group is working to make post-mortem diagnostics more accessible and better embedded in routine care. In collaboration with the Dutch Heart Foundation and Social Finance NL, the group is developing a societal business case. This will assess the societal and financial impact of post-mortem diagnostics and support discussions on sustainable implementation and funding.This will provide insight into both the societal and financial impact of post-mortem diagnostics and support discussions on sustainable implementation and funding.
The business case is being developed in three steps. First, a Theory of Change maps the societal challenge, target groups, and expected impact. This is followed by the development of the societal business case, in which key outcomes are translated into costs and benefits based on available data and scientific literature. Finally, the findings are consolidated into a report that will inform discussions with stakeholders on potential pathways towards structural funding. These insights will support dialogue with key stakeholders — including health insurers, the Dutch Healthcare Institute, the Dutch Healthcare Authority, and the Ministry of Health — to explore how post-mortem diagnostics can be sustainably embedded within the healthcare system.
Ultimately, this initiative aims to ensure that families are no longer left without answers, and that post-mortem diagnostics becomes an integral part of preventive cardiovascular care.
