Strengths and limitations of patient registries in infective endocarditis

Abstract

Background: Infective endocarditis (IE) is a serious albeit relatively infrequent disease. Given the paucity of cases, particularly in non-referral centres, patient registries have progressively gained relevance to inform about the epidemiology, clinical presentation, and natural history of IE in the last two decades. Although they have become key to advancing knowledge of IE, registries also have shortcomings that lead to relevant consequences that are often overlooked.

Objectives: We aimed to discuss the strengths and limitations of registries in IE.

Sources: We conducted a PubMed search of relevant articles published between January 2000 and June 2022.

Content: The backbone of the contemporary knowledge on IE has been built upon data collected in prospective registries, which has allowed us to collect data on relatively unknown aspects of the disease, identify knowledge gaps, and generate new hypotheses, serving as platforms for further research endeavours. Well-exploited registries can provide key information on how IE is distributed across populations and how it differentially impacts patients and subgroups. However, registries face several difficulties, such as the definition of IE, which includes subjective variables and changes over time. Other limitations include difficulty achieving a comprehensive collection of cases (which depends on both project funding and information systems), over-representation of the centres that created the registry, lack of inclusion of variables to assess endpoints that are relevant to patients in terms of quality of life and prognosis, and ethical issues.

Implications: The review of the advantages and disadvantages of registries aims to improve the quality of the information collected, the viability of the registry itself, and the ability to answer questions that are relevant to both researchers and patients.

Keywords: Clinical research; Epidemiology; Infective endocarditis; Limitations; Quality; Real-world data; Real-world evidence; Registry; Strengths.