Heart4Data

2022

Registry-based research enables faster and cheaper clinical research by using real world data. This is particularly important in patient populations where research is otherwise difficult to conduct, such as heart failure patients with comorbidities. The main aim of the Heart4data consortium is therefore to develop a sustainable infrastructure for cardiovascular registry-based research in the Netherlands. This includes governance and Information Technology (IT) infrastructure, research methods, FAIR (findable, accessible, interoperable and reusable) data creation and data linkage with relevant databases. 
 
About Heart4Data 
The Heart4Data consortium is building on the core qualities and experience of DCVA partners. Heart4Data will create a DCVA Health Data Hub that will be part of the DCVA pillar Data Infrastructure to combine all expertises across the different DCVA partners as part of the sustainability program. 
 
In addition, Heart4Data will contribute to improvement of valorisation and implementation through accelerating the generation of results and facilitate DCVA consortia by providing a platform for research at lower operational costs compared to more traditional research methods. 
 
The Research 
1. To create a national and sustainable FAIR data-based infrastructure for cardiovascular registry-based research. 
The infrastructure includes a framework/structure for the governance, and the ethical, legal, financial, technological and methodological factors. There will be a special focus on heart failure in this project by creating a sustainable heart failure (and atrial fibrillation (AF)) registry in the Netherlands Heart Registration (NHR) and links with other relevant national and regional registries and data sources. 
 
2. To use and prove value of the infrastructure by conducting two projects: 
- Observational, longitudinal research on the entire spectrum of patients with heart failure (including patients with HFpEF) in the Netherlands (project A) with focus on guideline recommended diagnostic trajectories and treatment. 
- Prospective randomized clinical research on pharmaco-therapeutic treatment in patients with chronic heart failure (project B: SELEQT-HF).

The origin

One of the five top priorities named on the cardiovascular disease research agenda that the Dutch Heart Foundation set in 2014 was finding better treatment for heart failure and arrhythmias. Back in 2014, when the research agenda was drawn up, it became clear that registry-based research is essential for this. The Dutch Heart Foundation therefore funded this study as part of the collaboration with the ZonMw GGG program on Good Use of Medicines (Goed Gebruik Geneesmiddelen).

For a complex project such as this, collaboration within the entire cardiovascular field is an important starting point. The consortium is a collaboration between several DCVA partners; the Dutch Heart Foundation, ZonMw, NHR, WCN, Harteraad, NLHI, NVHVV, NVT, NVVC, VIG and Health-RI.

 

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Right Heart Care In the Right Place

2023
Atrial fibrillation and heart failure are two of the major cardiovascular challenges of our time. It is important that these conditions are detected in time and treated according to guidelines. This is far from always the case. It is sometimes not clear that certain symptoms are caused by atrial fibrillation or heart failure, neither to the patient himself nor to health care providers. As a result, it sometimes takes a long time before someone receives the right treatment. The chronic nature of heart diseases such as atrial fibrillation and heart failure also means that patients with these conditions are seen by many healthcare providers. To achieve this in a high-quality and transparent manner, optimal cooperation between the various care domains is necessary. It is important that the principle of right care in the right place (JZOJP) is applied. However, network care is complex and the effective organization of JZOJP by the right healthcare professional is still far from commonplace despite the many initiatives. The origin Better treatment of these conditions was a priority on the cardiovascular disease research agenda. This is why the Dutch Heart Foundation and ZonMw have started the thematic collaboration “Right Heart Care In the Right Place". By combining expertise, we want to detect as many people as possible with atrial fibrillation and heart failure early and treat them optimally. We are doing this in various ways: jointly setting up subsidy rounds to support regional collaborations, supporting a national support structure for the regions and overarching activities that contribute to knowledge development. As part of Right Heart Care In the Right Place, the network program of the Dutch Society of Cardiology, NVVC Connect, together with involved network partners, facilitates an adequate national support structure for affiliated regional collaborations, or Connect regions. The Connect regions are supported and guided in, for example, preparing the subsidy application and they receive support during the implementation of the regional transmural agreements. The research The Right Heart Care In the Right Place consists of two forms of support: the National Impulse: the aim is to set up a sustainable national support structure that stimulates and guides regions in the regional design and implementation of network care in the field of atrial fibrillation and heart failure the Regional Impulse: the aim of the Regio-Impulse Cardiac Care is to support regional alliances, the Connect regions, in implementing regional transmural agreements. By bringing together the various care providers from the 3rd, 2nd and 1st line, these collaborative ventures jointly offer cardiological care for atrial fibrillation or heart failure more integrally and transmurally. In this way, the patient comes into contact with the healthcare provider who can best contribute to the care need at that moment. A maximum of 22 Connect regions can receive funding to implement the transmural agreements or to optimize the implementation in their region.
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DOUBLE DOSE

2021
Cardiomyopathies, caused by genetic mutations affecting cardiac muscle components, pose significant economic and societal burdens due to their hereditary nature and early onset. Despite known genetic defects, predicting disease progression remains challenging due to extreme clinical variability. Recent research indicates that cardiomyopathy mutations induce metabolic stress, exacerbated by factors like obesity, which can accelerate disease progression. The Double Dose hypothesis suggests that targeting metabolic stress may offer preventive or curative strategies for these conditions. The Focus The Double Dose Consortium aims to understand how cardiomyopathy-causing mutations lead to structural changes in cardiomyocytes. This interdisciplinary effort combines experts in preclinical research, clinical genetics, health technology assessment, and clinical care focused on cardiomyopathy in both children and adults. The Research The consortium combines experts in preclinical research, clinical genetics, health technology assessment and clinical researchers with a strong clinical focus on cardiomyopathy in children and adults. These experts investigate how obesity and muscle adiposity contribute to vascular and cardiac muscle dysfunction in mutation carriers through the analysis of clinical data, patient samples, and experimental models. They will also study the mechanisms underlying ultrastructural changes in cardiomyocytes caused by these mutations, leading to impaired metabolism, contraction, relaxation defects, and disrupted cellular communication within the heart. Utilizing extensive patient cohorts and ongoing studies, the consortium aims to optimize care for cardiomyopathy patients by assessing the cost-effectiveness of diagnostics and clinical interventions. They plan to translate findings on metabolic alterations into clinical trials targeting treatments that reduce metabolic stress. The Double Dose program will establish biobanks containing serum, tissue, and induced pluripotent stem cell-derived cardiomyocytes (iPSC-CMs) to provide mechanistic insights into cardiomyopathy pathophysiology and improve diagnosis and care. Origin This consortium was funded through the Impulse Grant program by the Dutch Heart Foundation, together with Stichting Hartedroom. The consortium is a continuation of the Dosis consortium, in which the interaction between mutation and external factors was investigated. They found that cardiomyopathy-mutations induce metabolic stress and that secondary metabolic stress, such as obesity accelerates disease progression.  
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