A Collection of Clinical and Epidemiologic Data Combined With Tissue and Blood From Patients With a Diagnosis of Neuroendocrine Tumors

Study Overview
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Brief Summary
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The purpose of this study is to establish a neuroendocrine tumor registry. A registry is a collection of information. To create this registry, the investigators would like to get information, blood and tumor samples from people with neuroendocrine tumors. By collecting this information and material, the investigators are hoping to learn more about the genetic causes of neuroendocrine tumors. All of this will help us to better understand neuroendocrine cancer, so the investigators can find better ways to treat and diagnose this disease. DNA will be taken from the blood samples and will be used in future studies. This will be an important resource from which the investigators can study genes that may be related to a higher risk of neuroendocrine tumors. The information collected will include medical information, family history of cancer and your answers to questions about how the cancer affects quality of life.

Official Title
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Gastroenteropancreatic and Unknown Primary Neuroendocrine Registry A Collection of Clinical and Epidemiologic Data Combined With Tissue and Blood From Patients With a Diagnosis of Neuroendocrine Tumors

Conditions
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Gastric Cancer, Pancreatic Cancer

Intervention / Treatment
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* Other: questionnaire, Blood specimens


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Diagnosis of gastroenteropancreatic neuroendocrine tumors or neuroendocrine tumors of unknown primary Willing to donate blood samples >= 18years old Patients may have received prior hormonal therapy, cytotoxic therapy, irradiation, immunotherapy or surgical therapy Exclusion Criteria: Have any condition, which in the opinion of the primary MSKCC clinician or investigators precludes their ability to provide informed consent

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| 1<br>This registry will be open to all patients with GEPNET or NET of unknown primary. | Other: questionnaire, Blood specimens<br>* All participants will complete an epidemiology study questionnaire as well as a quality of life questionnaire. They will also be asked to donate blood samples. We will request participation in a tissue repository consisting of fresh frozen or paraffin embedded tissue. The repository will be of serum, plasma and tumor tissue. Follow-up will occur on patients every 6 months for the first year after consent and then annually.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| To develop a tissue, serum, plasma and DNA bank from individuals with NET. This bank will be combined with epidemiologic and clinical information to create a NET database. |  | conclusion of the study | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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PANCREAS, STOMACH, Questionnaire, 08-105