In 2022, the Health Department recorded 1,104 deaths in the Grand Duchy caused by diseases of the circulatory system, or 25.8% of deaths. A registry could reduce this number.
To celebrate the tenth anniversary of the National Cancer Registry (RNC) in October 2023, the Minister of Health at the time, Paulette Lenert, admitted in her speech that “the role and missions of the National Cancer Registry are essential to the development of appropriate policies. It makes it possible to measure the effectiveness and efficiency of public health initiatives in terms of prevention and screening programs, added the minister to underline the importance of such a register.
Couldn’t one be created for cardio-neurovascular diseases? This is the question asked by two Liberal MPs, Mandy Minella and Gérard Schockmel, to Minister Martine Deprez, and it is not trivial. In 2019, nearly 18.6 million deaths worldwide were attributable to cardio-neurovascular diseases alone, or 31% of all deaths.
In Luxembourg, the situation is relatively similar and cardio-neurovascular diseases represent, in Luxembourg, the leading cause of mortality. In 2022, the Health Directorate’s register of causes of death recorded 1,104 deaths in the Grand Duchy caused by diseases of the circulatory system, representing 25.8% of all deaths.
Faced with these figures and given the conclusive experience carried out to combat cancer, the deputies consider that the establishment of a national register on cardio-neurovascular diseases would be of prime importance. It could enable the implementation not only of prevention and screening, but also of faster and more effective treatment.
The registers are therefore not constructed in “real time”
There is a national plan to combat cardio-neurovascular diseases, but at this stage a registry in charge of collecting and analyzing data in this area will still take time to be created. The Ministry of Health and Social Security recognizes the importance of registers, and to enable structured analysis of the health data they contain, it is currently working on the establishment of a suitable legal framework.
The ministry clarifies to deputies that this register is intended for secondary use, that is to say for public health purposes, or even tertiary, for research and innovation. “Registers are therefore not constructed in “real time”, but require sometimes complex data collection, from multiple and varied sources, followed by cross-checking and verification of the quality of this data,” responds the ministry.
The first attention for those involved in the national cardio-neurovascular diseases plan (2023-2027) must be focused on the scope of the data. Indeed, cardio-neurovascular diseases are particularly diverse and their determinants are also diverse. A scope of the corresponding data must first be decided.
Next, it is necessary to identify the actors collecting and analyzing data on cardio-neurovascular diseases, which also include professionals collecting and analyzing data on medications. Another working group acting for the national plan must create a technical sheet to provide information in a standardized manner on the nature of the data available.
Many problems and risks related to the quality and availability of data must be identified. This concerns, for example, the exchange of information and data between actors, financial and human issues concerning the sustainability of collections and analyses, legal issues, similar collections carried out by different actors or even the issue of the consent of the participants.
As to whether such a register could be accessible to emergency services (CGDIS) to guarantee rapid and appropriate treatment to the needs of patients, therefore for primary use, it would first be necessary to have access to the patient’s medical data in the context of of a computerized file.
Setting up a register, as valuable as it may be, does not happen overnight.
