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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| 1 | This registry will be open to all patients with GEPNET or NET of unknown primary. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| questionnaire, Blood specimens | Other | 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. |
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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Patients with GEPNET or NET of unknown primary
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| Name | Affiliation | Role |
|---|---|---|
| Diane Reidy-Lagunes, MD | Memorial Sloan Kettering Cancer Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Memorial Sloan-Kettering Cancer Center at Basking Ridge | Basking Ridge | New Jersey | United States | |||
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| Label | URL |
|---|---|
| Memorial Sloan-Kettering Cancer Center | View source |
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All participants will be invited to provide a DNA (blood sample) and tissue sample for the purposes of developing a tissue repository. Blood samples will be collected. Expected accrual is 150 patients per year. Patients who donate blood and/or tissue samples are considered evaluable for protocol; however, it is preferred that both are obtained.
|
| Memorial Sloan-Kettering Cancer Center at Commack |
| Commack |
| New York |
| United States |
| Memorial Sloan Kettering Cancer Center | New York | New York | 10065 | United States |
| ID | Term |
|---|---|
| D013274 | Stomach Neoplasms |
| D010190 | Pancreatic Neoplasms |
| ID | Term |
|---|---|
| D005770 | Gastrointestinal Neoplasms |
| D004067 | Digestive System Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D004066 | Digestive System Diseases |
| D005767 | Gastrointestinal Diseases |
| D013272 | Stomach Diseases |
| D004701 | Endocrine Gland Neoplasms |
| D010182 | Pancreatic Diseases |
| D004700 | Endocrine System Diseases |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |
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