National heart failure registry aiming to improve care and research
The Swedish Heart Failure Registry (SwedeHF) was implemented in 2003 to collect data on people with heart failure (HF).
The majority (88%) of hospitals and approximately 10% of primary care clinics enter data on the registry using a web-based platform that collects around 80 variables per patient. These variables include results from laboratory tests, ejection fraction, demographics, clinical characteristics, comorbidities and cardiovascular treatments.
Since 2005, SwedeHF has also been collecting information on symptoms and quality of life. Collected data can be linked to other national databases, namely the National Patient Registry, which covers a range of diseases (such as cancer, kidney disease and stroke), and Statistics Sweden, which records socioeconomic data.
SwedeHF has helped to improve HF care and research in various ways. For example, the data have contributed to a better understanding of the epidemiology of HF in the country and which treatments may be most appropriate for specific patient subgroups, improving clinical practice. This may be one of the reasons for the lower mortality rates seen in people enrolled in SwedeHF compared with people with HF who are not enrolled in the registry.
References
Savarese G, Vasko P, Jonsson A, et al. 2019. The Swedish Heart Failure Registry: a living, ongoing quality assurance and research in heart failure. Ups J Med Sci 124(1): 65-69
RiksSvikt (Swedish Heart Failure Registry). About SwedeHF. Available from: https://www.ucr.uu.se/rikssvikt-en/quality-registry/about-swedehf [Accessed 01/04/20]
Schrage B, Uijl A, Benson L, et al. 2019. Association Between Use of Primary-Prevention Implantable Cardioverter-Defibrillators and Mortality in Patients With Heart Failure: A Prospective Propensity Score-Matched Analysis From the Swedish Heart Failure Registry. Circulation 140(19): 1530-39
Lund LH, Carrero J-J, Farahmand B, et al. 2017. Association between enrolment in a heart failure quality registry and subsequent mortality-a nationwide cohort study. Eur J Heart Fail 19(9): 1107-16