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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COVID@Heart

2020
About 10% of the COVID-19 affected patients develop critical illness with a high mortality rate. This critical illness appears to be strongly linked with cardiovascular disease, as the prevalence of cardiovascular comorbidities and risk factors (such as diabetes and obesity) are often found among hospitalized COVID-19 patients. The consortium COVID@Heart believes that mitigating this cardiovascular burden of Covid-19 should start early, while patients are (still) outside the hospital. The Research COVID@Heart has three core activities: Develop a tool to identify high-risk cardiovascular patients with COVID-19 in a home environment, before the critical illness emerges. This tool will allow general practitioners to better notify high-risk patients, monitor them more closely (e.g. by using home saturation measurements), prescribe preventive cardiovascular medication earlier ('moon shot') and refer them to a hospital promptly when needed. Create a diagnostic tool to improve early differentiation between COVID-19 and a myocardial infarction, addressing the challenge of overlapping symptoms faced by general practitioners. Design a questionnaire supplemented by select biomarkers and blood tests to enhance the detection of cardiovascular disease in COVID-19 survivors experiencing prolonged symptoms of fatigue and shortness of breath, as these symptoms are potentially linked to accelerated subclinical cardiovascular disease. Origin Accurate information on how cardiovascular patients fared while still at home is lacking. This information is crucial to prevent hospital admissions. Therefore, COVID@HEART focuses on people who are not hospitalized but are at home and treated by their general practitioners. The Dutch Heart Foundation supports and funds this research into the best treatment for cardiovascular patients with a coronavirus infection.  
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DEFENCE

2021
Currently, it is largely unknown to what extent the heart is involved in COVID-19. The aim of this project is to assess the incidence and consequences of cardiac damage in patients who have experienced COVID-19. How often does COVID-19 lead to myocardial damage? What are the short- and long-term consequences of this damage and what can we do to prevent it from occurring? These are the central questions that will be answered within the DEFENCE consortium. The Research The DEFENCE consortium integrates several national studies initiated at the onset of the COVID-19 pandemic, encompassing diverse patient groups as part of the COPP study, ranging from elite athletes (COMMIT study) and individuals recovering at home (COVID@Heart study) to hospitalized patients (CAPACITY-COVID registry and CAPACITY 2 study) and children with post-infection inflammatory syndromes affecting the heart (MIS-C). By harmonizing these initiatives, a unique cohort spanning the entire spectrum of COVID-19 severity has been established. The ongoing studies are extended at multiple levels within the DEFENCE project. This includes: Standardized Healthcare Pathway Implementation: Implementing and evaluating a standardized healthcare pathway to assess cardiac damage occurrence within 6 months post-hospitalization for COVID-19. Serial Cardiac Magnetic Resonance (CMR) Imaging: Performing serial CMR imaging to determine the prevalence and reversibility of myocardial damage, with all scans assessed in a core lab. Evaluation of Cardiovascular Symptoms: Assessing the incidence of cardiovascular symptoms such as chest pain and palpitations in the post-acute phase through patient questionnaires. Linking Data to National Datasets: Linking study data to national datasets at Statistics Netherlands to analyze long-term cardiovascular morbidity and mortality. To evaluate whether cardiovascular disease is a characteristic feature of COVID-19, a comparison with other respiratory tract infections, including seasonal influenza will be made. Origin This research has is funded by ZonMw, but has been set up through the efforts of WCN, NLHI, NHR, the Dutch Heart Foundation, NVVC, NVIC, Harteraad, and the EuroQol Research Foundation, who collaborate within the Dutch CardioVascular Alliance.
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