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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with or at risk of carcinoid heart disease |
|
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Study of the occurrence of Carcinoid Heart Disease | Other | Patient at high risk of Carcinoid Heart Disease (metastatic ileum or bronchial well-differentiated neuroendocrine tumors, patients with high level of urinary 5HIAA or with carcinoid syndrome) are followed with annual echocardiography to detect the occurrence of carcinoid heart disease. In case of documented Carcinoid Heart Disease, a six or three months' cardiac follow-up is necessary to evaluate the progression and the severity of the disease. Investigators collect the data of clinical parameters (flushes, diarrhea, …) biological parameters (urinary 5HIAA, NT-ProBNP …) and cardiac parameters that may influence the occurrence, severity and progression of Carcinoid Heart Disease. |
| Measure | Description | Time Frame |
|---|---|---|
| Carcinoid Heart Disease | Percentage of patients with carcinoid heart disease at diagnosis and during follow-up (carcinoid heart disease diagnosis will be assessed by an annual echocardiography). | 10 years (at the end of study) |
| Measure | Description | Time Frame |
|---|---|---|
| Cardiac surgery | Percentage of patients requiring cardiac surgery for the cardiac carcinoid heart disease | 10 years (at the end of study) |
| 5HIAA levels | Correlation between urinary 5HIAA levels at diagnosis and occurrence of carcinoid heart disease |
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Inclusion Criteria:
Patients over 18 years
Patients followed in a NeuroEndocrine Tumor center with a reference cardiologist
Patient with:
Information given to the patient and his documented non-opposition
Exclusion Criteria:
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Adult patients with metastatic well-differentiated ileum or bronchial neuroendocrine tumor, adult patients with carcinoid syndrome and/or urinary 5HIAA > 2 fold the upper limit of normal regardless the primary site of the tumor, and therefore likely to develop Carcinoid Heart Disease (CHD).
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Amiens | Amiens | 80054 | France | |||
| CHU Angers |
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|
| 10 years (at the end of study) |
| Survival | Overall survival in patents with and without carcinoid heart disease | 10 years (at death or at the end of study) |
| Angers |
| 49933 |
| France |
| CHU Bordeaux - Hopital Haut-Lévèque | Bordeaux | 33604 | France |
| APHP Beaujon | Clichy | 92118 | France |
| CHU Dijon | Dijon | France |
| GHICL Lille | Lille | 59000 | France |
| Centre Oscar Lambret | Lille | 59020 | France |
| CHRU Lille | Lille | 59037 | France |
| Hôpital Edouard HERRIOT, Institut du Cancer - Hospices Civils de Lyon | Lyon | 69437 | France |
| Institut Paoli-Calmettes | Marseille | France |
| APHP - Hopital Cochin | Paris | 75014 | France |
| APHP - Saint Antoine | Paris | 75571 | France |
| CHU Poitiers | Poitiers | 86021 | France |
| CHU Reims | Reims | France |
| CHU Rennes | Rennes | 35000 | France |
| Hôpital Haute Pierre | Strasbourg | 67098 | France |
| CHU Rangueil | Toulouse | 31059 | France |
| CHRU Tours | Tours | 37044 | France |
| Institut Gustave Roussy | Villejuif | 94805 | France |
| ID | Term |
|---|---|
| D002275 | Carcinoid Heart Disease |
| ID | Term |
|---|---|
| D008303 | Malignant Carcinoid Syndrome |
| D002276 | Carcinoid Tumor |
| D018358 | Neuroendocrine Tumors |
| D017599 | Neuroectodermal Tumors |
| D009373 | Neoplasms, Germ Cell and Embryonal |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D000230 | Adenocarcinoma |
| D002277 | Carcinoma |
| D009375 | Neoplasms, Glandular and Epithelial |
| D009380 | Neoplasms, Nerve Tissue |
| D006331 | Heart Diseases |
| D002318 | Cardiovascular Diseases |
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