Patient registries in clinical practice: the experience of Russia and foreign countries

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Introduction

Cardiovascular diseases (CVD) remainthe leading cause of death both globally and in the Russian Federation. According to World Health Organization data for 2021, more than 17.9million people fall victim to these diseases every year, which accounts for about one-third of all deaths worldwide. In Russia, the situation is even more alarming. According to Rosstat statistics for 2022, almost 47% of all fatalities are related to diseases of the circulatory system. Patients with chronic kidney disease (CKD) who require renal replacement therapy are at particular risk. The relationship between CVD and CKD is complex and bidirectional. On the one hand, these conditions share common risk factors, such as hypertension, diabetes mellitus, and obesity [1]. On the other hand, CKD is accompanied by specific complications such as hyperhydration, anemia, and mineral metabolism disorders, which significantly increase cardiovascular risk. In Russia, more than 50,000 patients receive programmatic renal replacement therapy, with 60–70% of them diagnosed with various forms of CVD [2]. Global statistics show that coronary heart disease (CHD) and stroke remain the leading causes of death, claiming approximately 9 and 6 million lives annually, respectively. According to statistics from the Russian Ministry of Health, in 2021, there were approximately 7 million cases of coronary artery disease and 8 million cases of chronic heart failure (CHF) registered in our country, with mortality after acute myocardial infarction reaching 15–20% in the first year. The current epidemiological situation is characterized by a complex intertwining of cardiovascular diseases with chronic kidney disease. This requires a comprehensive interdisciplinary approach for effective diagnosis, treatment, and prevention.

Materials and Methods

Effective management of these pathologies requires a systematic approach in the context of a complex epidemiological situation. Specialized disease registries are one of the key tools in this process. These tools enable monitoring, assessment of the quality of medical care, and optimization of healthcare resource allocation. Let us consider key examples of such registries and analyze their role in improving clinical outcomes and organizational decisions in patient care.

A comprehensive analysis of data from Russian and international medical registries was conducted. These registries contain information on patients with chronic noncommunicable diseases, such as cardiovascular and kidney diseases. The study is based on current sources published between 2000 and 2024.

The system analysis was carried out on key parameters: organizational models for building registries, patient coverage indicators, the nomenclature of clinical and epidemiological indicators collected, the degree of integration with medical information systems at various levels, and the practical results of the clinical application of these registries. The methodological basis of the study included a comparative analysis of the organizational structures and functional capabilities of various registries, a critical assessment of the quality of the data collected in terms of its completeness, reliability, and relevance, as well as statistical processing of key performance indicators for medical care.

Registers of Cardiovascular Diseases

Chronic heart failure registries. Both federal and regional registries of patients with CHF operate in the Russian Federation (RF). One of the first major projects in this area is the Russian hospital registry RUS-HFR [3]. It was established in 2012 and operates in three regions: St. Petersburg, Orenburg, and Samara. RUS-HFR collects data on patients with CHF in inpatient settings. The registry contains more than 250 parameters covering demographic data, comorbidities, test results, treatment information, and complications. Thanks to this level of detail, RUS-HFR allows researchers to conduct studies, analyze the epidemiology of CHF, and evaluate the quality of medical care. The registry is actively used for scientific research and the development of new approaches to the treatment of CHF.

The PRIORITY-CHF registry was launched in 2016. It is a multicenter study that includes outpatients from federal and regional centers in 50 regions of Russia [4]. The purpose of the registry is to study the epidemiology and clinical characteristics of outpatients with CHF. The registry records information on demographic data, comorbidities, treatment methods, and their effectiveness.

In 2018, a CHF registry was established in the Tyumen region, becoming part of an innovative three-stage healthcare system for patients with this disease [5]. The registry collects data from various medical institutions, monitoring the condition of patients at all stages oftreatment. To date, there are more than 10,000 patients with CHF in the Tyumen Region registry. The introduction of the registry has reduced the number of hospitalizations and complications, as well as improved the quality of life of patients.

Since 2019, a unified registry of patients with CHF has been operating in the Sverdlovsk Region. It contains data on more than 4,200 people with a confirmed diagnosis. The registry is integrated into the region's unified healthcare information system. The regional CHF center, which is part of this system, coordinates work and evaluates the quality and effectiveness of medical care in secondary and primary healthcare facilities. The center also advises doctors on complex issues related to the diagnosis and treatment of CHF, including telemedicine technologies.

In 2019, a three-tiered system of care for patients with CHF was established in the Perm Territory, including outpatient, inpatient, and specialized levels [6]. The CHF registry is integrated into the region's unified information system and collects data from all medical institutions, allowing for monitoring of patients' conditions. More than 10,000 patients with CHF are registered in the system. The uniqueness of the registry lies in the integration of data from different levels, the use of intelligent analytics to predict risks, and a patient-centered approach aimed at improving the quality of life of patients with CHF.

In 2018, the Republic of Tatarstan launched an CHF registry. The registry contains information on more than 10,000 patients, including demographic data, clinical characteristics, test results, treatment, and outcomes. Particular attention is paid to comorbidities such as hypertension and diabetes mellitus.

The CHF registry in the Moscow region was launched in 2020. It contains information about patients with CHF: demographic data, clinical indicators, test results, and treatment data. Its main purpose is to monitor and optimize the provision of medical care. The registry is actively used to develop regional programs and scientific research.

Scientists at the Novosibirsk Regional Clinical Cardiology Dispensary are developing a regional registry of patients with CHF. The registry is currently under development. It includes three levels: doctor, CHF registry office, and registry manager. The data will be analyzed by the system's intelligent core. The uniqueness of the registry lies in its intelligent support module, which will monitor the patient's condition and promptly inform the doctor of any changes in the degree of risk.

The experience of Russian CHF registries is consistent with global trends in cardiology. Large-scale registries such as the

ESC Heart Failure Registry, ADHERE Registry, and ASIAN-HF Registry are actively used in global practice.

The ESC Heart Failure Registry, created by the European Society of Cardiology in 2011, collects data on patients with CHF in more than 20 European countries and includes information on more than 10,000 patients [7]. The main findings revealed differences in the treatment of CHF between Western and Eastern Europe, high mortality and hospitalization rates, especially among patients with comorbidities such as diabetes and chronic kidney disease. The data obtained will help to develop clinical guidelines and improve treatment standards in Europe.

In 2001, the ADHERE (Acute Decompensated Heart Failure National Registry) was launched in the United States [8]. It focuses on hospitalizations of patients with acute decompensated CHF. The registry covers more than 300 medical centers and more than 100,000 patients. The main results showed that fluid retention and myocardial ischemia are the main causes of hospitalizations.

The ASIAN-HF Registry, launched in 2012, studies the characteristics of CHF in the Asian population [9]. The registry covers 11Asian countries and includes data from more than 6,000 patients. The main results showed that Asian patients with CHF are younger than European and American patients. It was also found that Asian patients are more likely to have CHF with preserved ejection fraction (СHF-PEF), which is associated with certain limitations in drug therapy in these countries.

QUALIFY (Quality of Adherence to Guideline Recommendations for Life-Sustaining Treatment in Heart Failure) is an international registry created in 2013 to assess compliance with clinical guidelines for the treatment of CHF and their impact on patient outcomes [10]. More than 7,000 patients from Europe, Asia, and Latin America participated in the study. The registry collected data on patients: age, gender, type of CHF, comorbidities, NYHA functional class, treatment methods, and outcomes (hospitalization, mortality, quality of life). The results showed that following the recommendations significantly improves outcomes in patients with CHF. The strictness of adherence to the recommendations varied across regions. Angiotensin-converting enzyme inhibitors/angio­ten­sin II receptor blockers, beta-blockers, and mineralocorticoid receptor antagonists were most commonly prescribed, but their dosages were often lower than recommended.

Coronary heart disease registries (CHD). The registry of patients after coronary artery bypass grafting, known as the Ricochet program, was launched in 2015. It includes data on more than 1,000 patients and is one of the first such projects in Russia [11]. The purpose of the registry is to evaluate long-term outcomes in patients after coronary artery bypass grafting for stable coronary heart disease. The main objectives are to study survival, the frequency of rehospitalizations, and the quality of life of patients.

The CHD PROGNOSIS study was launched in 2017 to evaluate outcomes in patients with chronic coronary artery disease [12]. The main objective of the project is to study the clinical and demographic characteristics of patients, their treatment methods, and the impact of therapy on long-term outcomes. The study showed that patients receiving modern treatments, such as P2Y12 inhibitors and statins, have a significantly lower risk of cardiovascular events. The registry already has more than 5,000patients, making this study one of the largest in the country on chronic CHD.

A study of long-term outcomes of acute myocardial infarction in Tomsk began in 2016 [13]. The registry analyzes data from electronic medical records, covering demographic information, clinical indicators, and treatment methods. The database already contains more than 3,000 patients. The analysis showed that modern treatment methods, such as thrombolysis and percutaneous coronary interventions, significantly reduce the risk of rehospitalization and complications.

In 2015, the Siberian Journal of Clinical and Experimental Medicine published an article on the launch of a registry of patients who had undergone coronary artery bypass grafting. The registry includes data on more than 1,000 people. This registry was created to study long-term outcomes (survival, frequency of rehospitalization, and quality of life) [14]. The collection of registry data allows for analysis and the development of effective strategies to improve postoperative patient care.

In addition, since the early 2010s, Russia has had a registry of patients with acute coronary syndrome and after percutaneous coronary intervention. It was created as part of national programs to improve cardiac care [15]. The registry covers several regions of Russia, including Moscow, St. Petersburg, the Tyumen region, and Tatarstan. Its main purpose is to track patients with acute coronary syndrome, which includes acute myocardial infarction and unstable angina. The analysis showed that modern treatment methods, such as percutaneous coronary intervention and thrombolytic therapy, significantly reduce the risk of complications and increase patient survival rates.

The EURObservational Research Programme is one of the largest projects in the field of medicine [16]. It was launched by the European Association of Cardiologists to study coronary heart disease in Europe. The programme started in 2009 and collected data on more than 10,000 patients from 20 countries. The main goal of the project is to analyze the epidemiology, clinical characteristics, and treatment methods of CHD. The results showed that in Western and Eastern European countries, therapy is carried out using different groups of drugs.

The ACTION Registry is actively used in the United States. It was created to study outcomes in patients with acute coronary syndrome [17]. This registry covers more than 300 centers and includes data on more than 100,000 patients. The main goal is to analyze factors affecting hospitalization and develop strategies to reduce it. The registry collects information on the reasons for hospitalization, the clinical condition of patients, the treatment methods used, and outcomes. The results of the observation show the positive effect of timely therapy on the frequency of complications and hospitalizations.

A multicenter study, the CREDO-Kyoto Registry, is being conducted in Japan. It covers more than 10,000 patients with coronary heart disease [18]. The registry was launched in 2002. Its purpose is to study the characteristics of CHD in Japanese people. The main objectives of the study are to analyze the clinical characteristics, treatment methods, and outcomes in patients with CHD. The results showed that Japanese patients with CHD are more likely to have chronic heart failure with preserved ejection fraction (CHF-PEF) than Europeans and Americans. It was also found that in some regions of Japan, access to modern treatments such as sodium-glucose cotransporter 2 inhibitors is limited.

The iFR-SWEDEHEART registry, created in the early 2010s as part of the Swedish SWEDEHEART system, deserves special attention [19]. It studies the instantaneous flow reserve (iFR) index to assess coronary artery stenosis and its impact on the treatment of patients with CHF. To date, data on tens of thousands of patients have been entered into the registry. The main goal of the registry is to compare the effectiveness of iFR with other methods, such as Fractional Flow Reserve (FFR), and to investigate long-term treatment outcomes. All data is standardized and anonymized. This resource is actively used to develop clinical guidelines, train cardiologists, and introduce new technologies.

Arterial hypertension registries (AH). The Federal Register of Arterial Hypertension (AH Register) in Russia was established in 2005 as part of a program to combat this disease [20]. The project covered 16 regions, and by 2020, the system contained data on 44,653 patients, including 20,569 people without cardiovascular diseases [21]. The main objectives of the registry are to assess the quality of diagnosis, treatment, and monitoring of patients with hypertension. The system tracked key indicators: identification of risk factors, diagnosis of target organ damage, adequacy of antihypertensive drug prescriptions, achievement of target blood pressure levels, frequency of dynamic monitoring, and implementation of preventive measures. The registry had a three-level management structure: federal (coordination by the Ministry of Health of the Russian Federation and the National Medical Research Center for Cardiology named after Academician E.I. Chazov), regional (implementation in polyclinics of the constituent entities of the Russian Federation), and local (work of district therapists and cardiologists).

An electronic registry of patients with arterial hypertension in the Tomsk region was created in 2004 [22]. The registry is structured as a two-level system. The lower level consists of databases from individual medical institutions in the region. The upper level is a central integrated database. A distinctive feature of the system is the automatic determination of AH visit status when a patient is registered for dispensary care with the ICD-10 code I10-I15. Technically, the registry is a web-based system that transfers data between levels via XML files over secure communication channels. The software automatically calculates the degree of arterial hypertension and the risk of complications and generates reports for decision-making.

The RECVAZA Federal Registry of Cardiovascular Diseases was established in 2012 in the Ryazan Region, where cardiovascular mortality exceeded the Russian average by 27% [23]. The registry includes data on 3,690 patients from three city clinics. Technically, the registry is a local electronic database where information is entered manually from outpatient records and dynamic observation charts. At the time of the study (2012–2014), the system was not integrated with federal medical registries. Today, the REKVAZA registry continues to operate within the framework of federal programs.

The United States has a National Health and Nutrition Examination Survey Program (NHANES) based on a modern cloud platform with a web interface [24]. As of 2023, the NHANES database has more than 1.2 million patients with hypertension registered. The system uses clinical guidelines (SPRINT, ACC/AHA) to automatically calculate cardiovascular risk and create personalized treatment programs.

In the UK, the national QResearch registry [25] uses a decentralized system with secure access via NHS Digital. It contains data on 3.4million patients with hypertension. Information is received from all levels of healthcare provision. A special feature of the system is the automatic generation of reports for general practitioners, which analyze compliance with NICE clinical guidelines. Patients who have not achieved their target blood pressure values are also highlighted.

Registers of percutaneous coronary interventions (PCI). There are several regional registries in Russia that track percutaneous coronary interventions. In the Sverdlovsk region, a registry of patients who have undergone PCI has been in operation since 2018. It was created as part of a program to improve cardiac care. The database currently contains more than 5,000 patients. The main purpose of the registry is to monitor the condition of patients after PCI. This helps to assess the effectiveness of procedures, the frequency of complications, and long-term outcomes. The registry is integrated into the region's unified healthcare system. The results showed that the use of modern coated stents and adherence to treatment recommendations reduce the risk of restenosis and repeat interventions. These data help to improve postoperative patient management and introduce new technologies, such as bioabsorbable stents.

The Tyumen Cardiology Center operates a prospective PCI registry, established in the 2010s [26]. Its purpose is to study long-term outcomes in patients after PCI, such as survival, frequency of repeat procedures, and quality of life. The registry collects data from various medical institutions in the region. Studies have shown that modern drug-eluting stents and adherence to treatment recommendations reduce the risk of restenosis and subsequent interventions.

Alongside Russian registries, large international projects are actively operating around the world. Their experience is of great interest to the medical community. One such project is EuroPCR, an authoritative registry in the field of interventional cardiology. It was created as part of the annual congress of the same name, which has been held in Paris since 2000. Data collection began in the mid-2000s. Today, the registry contains information on hundreds of thousands of patients who have undergone percutaneous coronary interventions. Data is collected from numerous medical institutions across Europe and beyond. EuroPCR is actively used for clinical research, for example, to compare stent types or evaluate new technologies. The registry is also used to develop clinical guidelines and train specialists in Europe.

The CathPCI Registry is an important international project aimed at improving cardiac care in the United States [27]. Created by the American College of Cardiology in 1998, it has become the largest database for monitoring the quality of medical services. Today, the registry includes more than 12 million records from 1,577 centers across the country. All data is anonymized, which means that patient consent is not required. Participants in the registry regularly receive reports on the quality of treatment, which helps them compare their performance with national standards. This data is actively used for research, developing clinical guidelines, and improving the quality of care. The registry also serves as a tool for post-marketing surveillance of medical devices such as vascular closure systems.

Registers of chronic kidney disease (CKD)

Several registries for monitoring patients with chronic kidney disease have been created and are operating successfully in Russia. One of them was launched in the 2010s as part of national programs to improve nephrological care [28]. The database now contains more than 10,000 people. The main purpose of this registry is to track the condition of patients with CKD, including those undergoing renal replacement therapy (dialysis). The data in the registry includes: patient demographics, clinical data (stage of CKD, comorbidities), laboratory test results, treatment methods used (dialysis, kidney transplantation, drug therapy), outcomes (survival, frequency of hospitalizations, quality of life). Data analysis showed that timely initiation of dialysis and adherence to treatment recommendations significantly improve patient survival and quality of life.

It is important to note that the CKD patient registry mainly collects data only on people with end-stage disease (stage 5 CKD according to the NKF-KDOQI classification) who require renal replacement therapy. This limits the ability to create a complete epidemiological picture at the population level.

In parallel with Russian registries, there are large international projects operating around the world that are of interest to the medical community. One such project is the US Renal Data System (USRDS), launched in the United States in 1988 [29]. This registry combines data on more than 700,000 patients using a centralized database integrated with national health systems. The main findings showed that patients on dialysis have a higher risk of cardiovascular complications compared to those who have undergone kidney transplantation.

In Europe, the ERA-EDTA Registry, created in the 1960s, is actively used [30]. The registry contains data on more than 100,000 patients from 30 countries.

In Australia and New Zealand, the ANZDATA Registry, founded in 1963, is in operation [31]. The registry combines data on more than 50,000 patients. Information is received from various medical institutions thanks to a centralized database.

The Japanese Society for Dialysis Therapy (JSDT) registry, established in 1968, occupies a special place in global practice [32]. It is the world's largest registry, combining data on more than 300,000 patients with end-stage CKD undergoing hemodialysis, peritoneal dialysis, or who have undergone kidney transplantation. The main task of the JSDT is to monitor the condition of patients, evaluate the effectiveness of treatment, and improve standards of medical care.

Data from foreign registries of patients with CKD show that patients on peritoneal dialysis have a higher quality of life than those undergoing hemodialysis.

Conclusions

An analysis of Russian and international registries of patients with chronic diseases shows their growing role in healthcare. Over the past decade, Russia has developed an extensive network of registries covering a wide range of pathologies: from cardiovascular diseases (the RUS-HFR and

PRIORITY-CHF, as well as registries of percutaneous coronary interventions) to arterial hypertension (Federal Registry of Arterial Hypertension, REKVAZA).

However, the analysis revealed systemic problems. For example, nephrology registries most often cover patients with end-stage chronic kidney disease, ignoring the early stages.

Registers are an important healthcare tool for tracking disease incidence, evaluating treatment effectiveness, and identifying risk factors for complications. Analysis of data from registers helps to develop personalized treatment programs that take into account the individual characteristics of patients.

Modern technologies, such as cloud solutions and integration with medical information systems, enable rapid access to information, analysis, and feedback, including through the use of telemedicine technologies. The introduction of electronic registries simplifies data collection and analysis, saves doctors' time, and improves the accuracy of information. This contributes to more informed clinical decisions and improved quality of care. In addition, registries can be used for scientific research aimed at studying the causes of diseases and developing new treatments.

Improvements in registries and the introduction of digital technologies improve the quality of medical care, optimize the use of healthcare resources, and reduce mortality from chronic noncommunicable diseases, increasing life expectancy and improving quality of life.

Funding. The study had no external funding.

Conflict of interest. The authors declare no conflict of interest.

Author contributions:

Elfimov D.A. – collection of literary sources, idea for the article, research plan, editing, approval of the final version of the article.

Elfimova I.V. – collection of literary sources, data processing, editing, writing the text, approval of the final version of the article.

Vasilkova T.N. – editing, approval of the final version of the article text.

About the authors

D. A. Elfimov

Tyumen State Medical University

Author for correspondence.
Email: yelfimovda@mail.ru
ORCID iD: 0000-0003-4875-1244
SPIN-code: 6487-8549

PhD (Medicine), Associate Professor, Associate Professor of the Department of Faculty Therapy of the Institute of Clinical Medicine

Russian Federation, Tyumen

I. V. Elfimova

Tyumen State Medical University

Email: yelfimovda@mail.ru
ORCID iD: 0000-0002-4724-0664
SPIN-code: 3111-0877

PhD (Medicine), Associate Professor, Associate Professor of the Department of Faculty Therapy of the Institute of Clinical Medicine

Russian Federation, Tyumen

T. N. Vasilkova

Tyumen State Medical University

Email: yelfimovda@mail.ru
ORCID iD: 0000-0003-4753-6630
SPIN-code: 3410-4460

DSc (Medicine), Professor, Head of the Department of Faculty Therapy of the Institute of Clinical Medicine

Russian Federation, Tyumen

References

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