A Collection of Clinical and Epidemiologic Data Combined With Tissue and Blood From Patients With a Diagnosis of Neuroendocrine Tumors
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.
|Study Design:||Observational Model: Cohort
Time Perspective: Prospective
|Official Title:||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|
- 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. [ Time Frame: conclusion of the study ] [ Designated as safety issue: No ]
Biospecimen Retention: Samples With DNA
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.
|Study Start Date:||August 2008|
|Estimated Study Completion Date:||August 2016|
|Estimated Primary Completion Date:||August 2016 (Final data collection date for primary outcome measure)|
This registry will be open to all patients with GEPNET or NET of unknown primary.
Other: questionnaire, Blood specimens
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.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00745381
|United States, New Jersey|
|Memorial Sloan-Kettering Cancer Center at Basking Ridge|
|Basking Ridge, New Jersey, United States|
|United States, New York|
|Memorial Sloan-Kettering Cancer Center at Commack|
|Commack, New York, United States|
|Memorial Sloan Kettering Cancer Center|
|New York, New York, United States, 10065|
|Principal Investigator:||Diane Reidy-Lagunes, MD||Memorial Sloan Kettering Cancer Center|