Carcinoid tumors are neuroendocrine tumors (NETs), most commonly originating from the gastrointestinal tract, that may secrete bioactive substances such as serotonin. Persistent exposure to these mediators can lead to carcinoid syndrome and, in up to 50% of patients, carcinoid heart disease (CHD). CHD is characterized by fibrotic degeneration of cardiac valves, predominantly right-sided, resulting in progressive valvular dysfunction and a significant increase in mortality.
The mechanisms underlying selective cardiac involvement and predictors of disease progression remain incompletely understood. In addition, optimal timing and selection of surgical versus transcatheter valve interventions, particularly in high-risk patients, require further clarification.
This multicenter, retrospective observational registry aims to identify and characterize patients with carcinoid heart disease and at least moderate valvular involvement. CHD is defined by confirmed neuroendocrine tumor, echocardiographic evidence of ≥ moderate valvular disease with features of fibrosis, elevated NT-proBNP (\>260 ng/L), and histopathological confirmation when available.
Approximately 100-120 consecutive patients will be enrolled over 12 months. Standardized data collection will include detailed echocardiographic assessment, demographic and clinical characteristics, cardiovascular risk factors, comorbidities, tumor features, oncological treatment history, and cardiac management strategies.
The primary objective is to describe the clinical profile and management of patients with CHD in a real-world multicenter setting. Secondary objectives include identifying factors associated with advanced valvular dysfunction and evaluating eligibility and outcomes of transcatheter valve therapies. The registry is expected to improve risk stratification and support clinical decision-making in carcinoid heart disease.
Age ≥ 18 years.
Confirmed diagnosis of a neuroendocrine tumor consistent with carcinoid heart disease.
Echocardiographic evidence of at least moderate valvular disease associated with endocardial fibrosis.
Elevated NT-proBNP levels (>260 ng/L) consistent with cardiac dysfunction.
Patients with insufficient clinical or imaging data to confirm carcinoid heart disease.
Presence of other primary cardiac conditions causing significant valvular disease unrelated to carcinoid syndrome (e.g., rheumatic heart disease, congenital valve disease)
Active participation in interventional clinical trials that would conflict with registry data collection
Patients younger than 18 years
The study population consists of adult patients with carcinoid heart disease who are evaluated and treated at multiple tertiary cardiology and oncology centers across Poland, including the National Institute of Cardiology. Patients included in this registry represent a real-world, multicenter cohort of individuals with neuroendocrine tumors complicated by moderate to severe valvular heart disease. Data are collected retrospectively from consecutive patients meeting eligibility criteria, reflecting standard clinical practice and management of cardiac and oncologic care. The population includes both patients managed conservatively and those considered for surgical or transcatheter valve interventions.
Cohort
Retrospective
Observational Registry of Carcinoid Heart Disease
Other interventionThis study is a multicenter, retrospective, observational registry of patients with carcinoid heart disease. The "intervention" consists of systematic collection and analysis of clinical, echocardiographic, and laboratory data, including demographic characteristics, cardiovascular risk factors, tumor features, metastatic status, and prior or planned cardiac and oncologic treatments. Detailed echocardiographic assessment of valve structure and function, chamber dimensions, and ventricular performance will be performed. The registry also identifies patients potentially eligible for transcatheter valve interventions. No experimental treatment is administered; all patient management follows standard clinical practice.
Characterization of patients with carcinoid heart disease
Characterization of patients with carcinoid heart disease defined as: presence of neuroendocrine tumor with hepatic metastases, echocardiographic evidence of right-sided valvular disease (tricuspid and/or pulmonary valve involvement), and biochemical evidence of serotonin excess (elevated urinary 5-HIAA or serum serotonin)
Identification of patients eligible for transcatheter valve interventions
Identification of candidates for transcatheter tricuspid or pulmonary valve replacement/repair among patients with carcinoid heart disease, assessed by echocardiography, CT-based anatomical evaluation and multidisciplinary Heart Team decision
Assessment of clinical factors associated with advanced valvular dysfunction
Identification of clinical factors associated with advanced valvular dysfunction in carcinoid heart disease, assessed by urinary 5-HIAA level (µmol/24h), NT-proBNP (pg/mL) and NYHA functional class
Assessment of echocardiographic factors associated with advanced valvular dysfunction
Identification of echocardiographic factors associated with advanced valvular dysfunction in carcinoid heart disease, assessed by tricuspid regurgitation grade and pulmonary valve function on transthoracic echocardiography
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