Utilisation of real-world data from heart failure registries in OECD countries - A systematic review

Xiaoyang Du; Adina Khamitova; Mattias Kyhlstedt; Sun Sun; Mathilde Sengoelge

doi:10.1016/j.ijcha.2018.02.006

Utilisation of real-world data from heart failure registries in OECD countries - A systematic review

Int J Cardiol Heart Vasc. 2018 Mar 9:19:90-97. doi: 10.1016/j.ijcha.2018.02.006. eCollection 2018 Jun.

Authors

Xiaoyang Du¹, Adina Khamitova¹, Mattias Kyhlstedt², Sun Sun^{1

2

3}, Mathilde Sengoelge⁴

Affiliations

¹ Department of Learning, Information, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
² Synergus AB, Stockholm, Sweden.
³ Division of Epidemiology and Global Health, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.
⁴ Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden.

Abstract

Background: Heart failure represents a major public health issue that impacts 26 million people globally. Currently, real-world data represents a key instrument for providing the verification of both internal and external validity, yet there is still a lack of understanding regarding its scope in complementing evidence of treatments for heart failure. This study aims to increase understanding of the utilisation of real-word data from heart failure registries in Organisation for Economic Co-operation and Development (OECD) countries.

Method: This was a systematic review of existing observational studies from heart failure registries in 35 OECD member countries. Studies from 2000 to March 2017 were identified through electronic databases (MEDLINE (Ovid), EMBASE, Web of Science Core Collection, CINAHL (Ebsco), Cochrane CENTRAL) and appraised according to eligibility criteria.

Results: Two-hundred and two studies met the inclusion criteria, in which the majority were published from 2013 to 2016. All 202 studies were observational, among which 98% were cohort studies (198). The median sample size of all studies was 5152 (2417 to 32,890) and median study period 55 months (33.0 to 72.0). Swedish heart failure registry had the most publications (24, 12%).

Conclusion: Since 2000 there has been an upward trend in the number of published observational studies on heart failure registries in OECD countries with increasingly diverse outcomes and advanced statistical methods to improve their validity and reliability. This indicates that the utilisation of real-world data has experienced a significant upsurge in complementing the findings of clinical trials for improved research of heart failure treatments.

Keywords: CONSORT, consolidated standards of reporting trials; HF, heart failure; Heart failure; OECD; OECD, Organisation for Economic Co-operation and Development; Observational study; PRISMA, Preferred Reporting Items for Systematic Review and Meta-Analysis; PROMS, patient reported outcome measures; RCT, randomised controlled trial; RRCT, registry-based randomised clinical trials; RWD, real-world data; Real-world data; Registry; Systematic review.