Circulation Journal
Online ISSN : 1347-4820
Print ISSN : 1346-9843
ISSN-L : 1346-9843
Acute Coronary Syndrome
Japanese Cardiovascular Disease Registry Research Is Heading for a New Era ― Significance of Disease Registries in the Era of Real-World Data ―
Kazuhiro NakaoTeruo NoguchiChris P Gale
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2021 Volume 85 Issue 10 Pages 1768-1769

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In Japan, improving the prognosis and quality of life of patients, as well as improving the healthcare system, requires comprehensive information to guide perspectives. It has long been awaited for a registry of ischemic heart disease to be built to evaluate the medium- to long-term prognosis of patients, representing the current health situation, under the initiative of academic societies. In this issue of the Journal, Sawano et al1 discuss the construction of a nationwide registry under the scheme of Cardiovascular Intervention and Therapeutics (CVIT) with the collaboration of the Japanese Circulation Society, and they investigate the 1-year outcomes of acute coronary syndrome (ACS) patients who underwent percutaneous coronary intervention (PCI). This is a wonderful achievement that makes it possible to evaluate the situation across Japan. This new registry will be central in building evidence, informing policy recommendations, and improving the quality of care and outcomes of patients. It is hoped that the registry will continue to develop and contribute to progress in medical care. The birth of this registry is a milestone towards these goals (Figure).

Figure.

Schematic of the Cardiovascular Intervention and Therapeutics (CVIT) registry and potential benefits. ACS, acute coronary syndrome; PCI, percutaneous coronary intervention.

Article p 1756

In recent years, especially in the era of utilizing real-world data,2 real-world databases such as JROAD-DPC and NDB have been constructed in Japan.3,4 Various studies have begun and started providing important information in the field of cardiovascular medicine. There are different perspectives on whether to treat registries as real-world data. However, if real-world data are limited to “administrative data”, it does not always provide all the information we need at present. A high-quality registry with a specific purpose, careful data collection process, and capacity for outcome evaluation will provide valuable information that cannot be replaced by other methods. High-quality registries are indispensable for the future.

Looking around the world, there are many high-quality databases of ischemic heart disease from the regional to the nationwide level. Nevertheless, this new initiative has different important roles. As Sawano et al discuss,1 it has the advantage of data from 47 prefectures that is representative of the country and is led by academic organizations. This can provide significant information across all of Japan and can be used for multiple purposes, including observational studies, drug and device surveillance, quality improvement and registry-based randomized controlled trials (Figure). And it can be also used for assessing the differences between healthcare systems for international comparisons. For example, the United Kingdom and Sweden have made successful comparisons using national data for ACS, which ultimately revealed that low primary PCI implementation might be involved in the varying prognoses for patients in the first decade of 2000.5 It also clarified whether there were practice differences of significance among hospitals for guideline-recommended treatment.6 A comparative study of trends in PCI in Japan and the USA revealed major differences in PCI practice patterns between the 2 countries.7 Thus, comparative studies with other countries can provide findings that cannot be obtained by studies within a single healthcare system.

Then, can we learn something from the data acquisition systems in other countries? To obtain representative data with less burden, several methods such as registering a case with random sample or conducting a survey only at a certain period of the year can be considered. However, with these methods, it will be difficult to make comparisons between facilities. In the UK, the ACS databases (The Myocardial Ischemia National Audit Project [MINAP])8 are linked to data from the Office for National Statistics to obtain prognostic data using national health service (NHS) patient ID without additional registration after discharge. Another issue is how to obtain multidimensional information for evaluating a wider variety of pathological conditions. In the UK, linkage between other databases held within The National Institute for Cardiovascular Outcomes Research (NICOR) is possible (e.g., MINAP and British Cardiovascular Intervention Society PCI registory9). With such a system, a detailed examination of the relationship with diseases and procedures is possible. As an additional note, the European Society of Cardiology has started to develop the European Unified Registries On Heart care Evaluation And Randomized Trials (EuroHeart) for supporting assessment and improvement of quality of cardiovascular care.10 It will offer a common IT- and dataset infrastructure, which will allow participating countries to undertake continuous quality improvement.

In Japan, there have been hurdles to building a database to obtain comprehensive information across the country; however, there is an urgent need to overcome them and build a sustainable system that can provide a national perspective. The current research is an important and fantastic step forward,1 in conjunction with the Cerebrovascular and Cardiovascular Disease Control Act, of Japanese national law, enacted in Japan on December 1, 2019.11 It is hoped that various kinds of registries and data sources including real-world data will continue to evolve, and that the collaboration of the various databases will contribute to improving the quality of medical care, the prognosis of patients, and the healthcare system across Japan.

Conflict of Interest

T.N. is an Editorial Board member of Circulation Journal.

Acknowledgement

The present work was supported by a grant from JSPS KAKENHI 20K08438 (K.N.).

References
 
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