The EURObservational Research Programme (EORP) has been collecting data from more than 2,200 centres in 80 countries across 20 different registries for more than 10 years. EORP was set up to give a clearer picture of global medical practice, covering a wide range of common and rare CVDs, interventional techniques and prevention.
Professor Bogdan A. Popescu (University of Medicine and Pharmacy ‘Carol Davila’ - Euroecolab, Emergency Institute for Cardiovascular Diseases ‘Prof. Dr. C. C. Iliescu’, Bucharest, Romania), the new chair of the EORP Oversight Committee, sees the role of EORP as two-fold: “Firstly, EORP registries bridge the gap between randomised controlled trials (RCTs), with their highly selected populations, and real-life clinical practice, providing important data on the heterogeneous range of patients seen every day. For rare diseases – where patient numbers are too small to make RCTs feasible – EORP registries often provide the only data source upon which to base decisions. Secondly, EORP aims to complement the development of guidelines to measure how well they are being applied in clinical practice. As such, EORP registries help complete the circle of knowledge that can lead to better treatment.”
One of the new EORP registries, the EURECA Imaging registry, showcases what EORP registries are all about. Guidelines now recommend greater use of non-invasive imaging and the EURECA Imaging registry will explore the extent to which non-invasive imaging is being implemented, any local variability and contributing factors, plus possible effects on patient management. EORP is currently recruiting for three registries: Heart Failure III, Pregnancy and Cardiac disease (ROPAC III) and Valve Durability (TAVI). A registry on Spontaneous Coronary Arterious Dissection (SCAD) is starting soon.
The ESC’s project EuroHeart (European Unified Registries for Heart Care Evaluation and Randomised Trials) goes one step further. This is a pan-European registry that will cover several common CVDs (heart failure, atrial fibrillation, acute coronary syndrome [ACS] and valve disease) on a single platform for all countries. ESC President, Professor Barbara Casadei (University of Oxford, UK) and Professor Lars Wallentin (Uppsala University, Sweden) are Co-Chairs of the EuroHeart Executive Committee. Prof. Wallentin explained, “Countries such as Sweden and the UK gain considerably from their registries – we know that many countries want to do the same, but do not have the necessary know-how or IT infrastructure. The ESC, acting as a central coordinator, plans to support other countries in developing their own national quality-of-care registries.” Prof. Wallentin underlined how uniquely valuable EuroHeart’s data will be to participating centres, their country and the region. “By inputting data on a continuous basis, each individual healthcare professional is helping to improve care at their local level, but are also contributing to a very large database as part of a strong European collaboration.”
He pointed out that individual centres and countries will be able to continuously evaluate the processes of care, adherence to guidelines and long-term outcomes and compare their results, all on the same platform. Patients will also be able to assess outcomes at different hospitals. “While there will be scope for comparisons, the main aim of EuroHeart is to create a constant learning experience with immediate feedback. With hundreds of thousands of patients in the system, the lessons will be immensely valuable. The system will also allow safety surveillance of new drugs and implantable devices in collaboration with industry. Finally, the EuroHeart system will provide a platform for international registry-based prospective trials that are currently revolutionising the way we provide definitive evidence of the safety and efficacy of both new and old treatments.”
The development of EuroHeart was initiated in 2019 and the project is making important advancements; a prototype of the IT platform has been developed and Estonia has been selected to be the first pilot country. The EuroHeart Data Science Group, in collaboration with experts from the ESC Associations, has developed harmonised variables for patients with ACS and those undergoing percutaneous coronary intervention procedures and are now working on the same for heart failure. Standardised variables for valve disease and atrial fibrillation will follow. Details of EuroHeart, including a video, can be found at: www.escardio.org/Research/euroheart.
The need for real-time data has been exemplified by the COVID-19 pandemic, and Prof. Casadei thinks that a new connected continuous approach to data collection is essential. “The availability of accurate and rapidly accessible patient data can inform health policies in an emergency and avoid preventable death and disability,” she said. “During the COVID-19 crisis, the ESC reported a 50% drop in heart attack patients coming to hospital across Europe. But we reported this after the fact, because we don’t have a feedback system fast enough to report in real-time. This must be achieved across Europe through the development of harmonised continuous patient registries and the digitisation of our health systems.”