Development and Progression of Carcinoid Heart Disease in a Cohort of Adult Patients With Neuroendocrine Tumors

Development and Progression of Carcinoid Heart Disease in a Cohort of Adult Patients With Neuroendocrine Tumors Carcinoid Heart Disease (CHD): An Observational French Multi-Centre Cohort Study CRUSOE - NETs (CaRdiac UltraSonic OutcomEs - NETs)

Carcinoid Heart Disease (CHD) is a rare form of heart disease, occurring in over 50% of the patients with carcinoid syndrome. Pathophysiology, prognostic factors of development of Carcinoid Heart Disease and progression of disease remain unclear.

This observational multicenter cohort study is designed to study the occurrence of Carcinoid Heart Disease in patients with differentiated carcinoid tumors, to describe numerous factors influencing the occurrence, severity, progression and long-term survival of patients with Carcinoid Heart Disease. Basic informations and detailed diagnosis informations (oncological and cardiac parameters), are collected by professional doctors. Clinical outcomes (onset of Carcinoid Heart Disease, cardiac surgery, related death) will be followed up every year or every six/three months if clinically indicated.

Inclusion Criteria:

• Patients over 18 years

• Patients followed in a NeuroEndocrine Tumor center with a reference cardiologist

• Patient with:

  • Histologically documented metastatic well-differentiated ileum neuroendocrine tumor or
  • Histologically documented metastatic well-differentiated bronchial neuroendocrine tumor, or
  • Histologically documented well differentiated neuroendocrine tumor, regardless of the primitive site or unknown primitive site and presenting a carcinoid syndrome and / or an elevation of urinary 5HIAA > 2 fold the upper limit of normal range

• Information given to the patient and his documented non-opposition

Exclusion Criteria:

• Poorly differentiated neuroendocrine carcinoma
• Patient unable / unwilling to follow the cardiac monitoring recommended by good practice data
• Any medical, geographical, sociological, psychological or legal situation that does not allow the patient to complete the study