Rationale and design of the turkiye heart failure (TURK-HF) registry
U Kocabas, I Ergin, C Altin, C Yildiz, S Murat, T Kivrak, B Murat, S Gunay Polatkan, C Turgul, M Kaplan, D Inan, S Akdeniz Oskay, F Cakan, U O Turk, I TengizAbstract
Background and aim
The Türkiye Heart Failure (TURK-HF) registry was designed to address the knowledge gap regarding the identification, management, and long-term prognosis of patients with heart failure (HF) in real-world settings. The registry also aimed to document barriers to externalizing current guidelines for routine patient care in the country.
Methods
The TURK-HF registry is a national, multicenter, prospective, observational study of unselected patients with HF, regardless of ejection fraction, who presented with de novo, chronic, or acute HF. A total of 51 investigators from 41 centers in 25 cities across Türkiye participated in the study (Figure 1). The TURK-HF registry data will be collected using an electronic case report form (e-CRF) integrated into an electronic data capture system.
Results
The baseline assessment of patients will include socio-demographic data, frailty assessment, health-related quality of life (HRQoL) questionnaire, HF-related information, medical history and comorbidities, H2FPEF score calculation, and medical and device-based HF therapies (Figure 2). To determine the socio-economic status and health inequalities, detailed data will be obtained on age, sex, marital status, urban or rural living, housing conditions and household income, education level, and employment status. We integrated the Canadian Study of Health and Aging Clinical Frailty Scale into the TURK-HF registry to measure the clinical frailty of patients with HF. The TURK-HF registry was registered with the EuroQol Customer Portal, and the EQ-5D-5L questionnaire will be administered to patients enrolled in the TURK-HF registry to determine their HRQoL. We integrated an automatic calculation system into the e-CRF as a ‘‘decision support tool’’ to calculate the H2FPEF score in patients with HF with preserved ejection fraction. We integrated an assessment algorithm into the e-CRF to assess the use or non-use of GDMT by registry participants. Longitudinal data will be collected at regular outpatient visits every six months, with a margin of error of one month, or via telephone interviews if the patient is not eligible for outpatient visits (Figure 2). The clinical endpoints of the TURK-HF registry will reflect clinical ‘‘hard’’ endpoints, including cardiovascular mortality or all-cause mortality, morbidity outcomes (hospitalizations for HF), clinician-interpreted or patient-reported outcomes, and surrogate endpoints, either alone or in combination.
Conclusion
The TURK-HF registry offers comprehensive and distinctive insights into contemporary HF clinical characteristics, diagnostic methods, treatments, and outcomes. This registry has the potential to influence implementation strategies, clinical research, and public policies across Türkiye.For image description, please refer to the figure legend and surrounding text.For image description, please refer to the figure legend and surrounding text.