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

Active, not recruiting

Brief Summary: 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.

Recruitment & Eligibility

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

Arm && Interventions

Group	Intervention	Description
Patients with or at risk of carcinoid heart disease	Study of the occurrence of Carcinoid Heart Disease	* Adult patients with well-differentiated metastatic ileum or bronchial neuroendocrine tumor * Adult patients with carcinoid syndrome or elevated urinary 5HIAA regardless of primary site

Primary Outcome Measures

Name	Time	Method
Carcinoid Heart Disease	10 years (at the end of study)	Percentage of patients with carcinoid heart disease at diagnosis and during follow-up (carcinoid heart disease diagnosis will be assessed by an annual echocardiography).

Secondary Outcome Measures

Name	Time	Method
Survival	10 years (at death or at the end of study)	Overall survival in patents with and without carcinoid heart disease
Cardiac surgery	10 years (at the end of study)	Percentage of patients requiring cardiac surgery for the cardiac carcinoid heart disease
5HIAA levels	10 years (at the end of study)	Correlation between urinary 5HIAA levels at diagnosis and occurrence of carcinoid heart disease

Locations (19): CHU Amiens
🇫🇷
Amiens, France
CHU Angers
🇫🇷
Angers, France
CHU Bordeaux - Hopital Haut-Lévèque
🇫🇷
Bordeaux, France
APHP Beaujon
🇫🇷
Clichy, France
CHU Dijon
🇫🇷
Dijon, France
GHICL Lille
🇫🇷
Lille, France
Centre Oscar Lambret
🇫🇷
Lille, France
CHRU Lille
🇫🇷
Lille, France
Institut Paoli-Calmettes
🇫🇷
Marseille, France
APHP - Hopital Cochin
🇫🇷
Paris, France
APHP - Saint Antoine
🇫🇷
Paris, France
CHU Poitiers
🇫🇷
Poitiers, France
CHU Reims
🇫🇷
Reims, France
CHU Rennes
🇫🇷
Rennes, France
Hôpital Haute Pierre
🇫🇷
Strasbourg, France
CHU Rangueil
🇫🇷
Toulouse, France
CHRU Tours
🇫🇷
Tours, France
Institut Gustave Roussy
🇫🇷
Villejuif, France
Hôpital Edouard HERRIOT, Institut du Cancer - Hospices Civils de Lyon
🇫🇷
Lyon, France