The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

Caring for Carcinoid Foundation Neuroendocrine Tumor Bioconsortium

CFCF will collaborate with leading cancer research centers to launch the CFCF Neuroendocrine Tumor Bioconsortium. This Bioconsortium will link the biobanks at five centers, which specialize in carcinoid and related NETs. A biobank is a collection of stored tissue specimens linked to a database of anonymous patient information. Because of this collaboration, researchers will be able to identify connections between the molecular characteristics of tissue samples and the patient data associated with individual disease progression, and to test and validate hypotheses that arise from these correlations. This exciting collaboration will enable scientists to characterize specific disease pathways, uncover genetic and environmental indicators of disease, identify novel drug targets, and tailor treatment programs to the needs of patients.


Dana-Farber Cancer Institute

Massachusetts General Hospital

MD Anderson Cancer Center

Memorial Sloan Kettering Cancer Center

Stanford Cancer Center


Matthew Kulke, M.D.

Daniel Chung, M.D.

James Yao, M.D.

Diane Reidy-Lagunes, M.D.

Pamela Kunz, M.D.

2 years
Research Objectives: 

To build a Neuroendocrine Tumor Biospecimen Consortium (NTBC), thereby enabling investigations of:

  • Etiology and molecular epidemiology of neuroendocrine tumors
  • Early detection and diagnosis of neuroendocrine tumors
  • Predictors of patient outcome and treatment toxicity
  • Novel drug targets

The National Cancer Institute has recently identified the lack of high quality, highly characterized biospecimens as the number one roadblock to translational research and the identification of better treatments for cancer. Generally, the term human biospecimen "bank" describes a collection of stored tissue specimens that have been surgically removed under uniform procedures, as well as a database of de-identified patient information that can be connected to each tissue sample. Access to even a fraction of a specimen enables researchers to draw connections between the state of the specimen on a molecular level and patient data associated with individual disease progression, and to test and validate hypotheses that arise from these observations. More specifically, well-designed tissue repositories are useful for characterizing specific disease pathways, uncovering genetic and environmental indicators of disease, and identifying drug targets; all of which are vital steps in understanding how to prevent and cure a disease. Such repositories are difficult to develop for rare diseases such as neuroendocrine tumors, since most cancer centers do not see enough patients to collect a critical mass of samples to conduct truly robust studies. Further, if tissue collection procedures or patient data content varies between institutional biospecimen banks, it is challenging to use pooled data in a scientifically meaningful way. The Neuroendocrine Tumor Biospecimen Consortium (NTBC) seeks to redress this imbalance through linking the carcinoid-tissue banking efforts of five separate institutions that are strongly invested in neuroendocrine tumor research: Dana-Farber Cancer Institute, MD Anderson Cancer Center, Massachusetts General Hospital, Stanford University Cancer Center, and Memorial Sloan Kettering Cancer Center.

This initial platform will be scalable, and should be easily replicated at additional institutions with an interest in pursuing neuroendocrine tumor research.


Daniel Chung, M.D. Update: Establishment of the NET biobank has created an invaluable resource and infrastructure for translational studies, and a prime example is the use of samples from this repository to identify a role for the CDKN1B gene in a multi-site study this year.  These studies would not have been possible without the vision and commitment of the CFCF.

Diane Reidy-Lagunes, M.D. Update: In 2008, Dr. Reidy was selected as one of five investigators in the Neuroendocrine Tumor Biospecimen Consortium (NTBC). From this grant, the researchers were able to develop a registry or “tumor bank” which is defined as a collection of stored tissue specimens, as well as a database of de-identified patient information that can be connected to each tissue sample.  Access to these specimens enables scientists to potentially draw connections between the tumor on a molecular level and patient data associated with individual disease progression. To date, they have 250 patients enrolled in the registry.  As this data matures, they hope to conduct retrospective studies to help better define different types of NETs. An example of such a study is a recent retrospective review of high grade pancreatic neuroendocrine carcinomas. In this study, she evaluated patients with high grade pancreatic neuroendocrine carcinomas, many of whom were enrolled on the registry. She found that high grade pancreatic neuroendocrine carcinomas are extremely aggressive tumors with a poor prognosis. This entity is distinct to the well differentiated NETs. Based on this data, she recommended that further research and development of novel therapies be considered.

Matthew Kulke, M.D. Update: Using this resource, he identified characteristic regions of genomic gain and loss in neuroendocrine tumors using single nucleotide polymorphism array analysis, and identified expression of the DNA repair enzyme MGMT as a key predictor of neuroendocrine tumor response to alkylating agents.


Personal Statement: 

Matthew Kulke, M.D., Dana-Farber Cancer Institute

The systematic collection of tissue and associated clinical data within the CFCF neuroendocrine tumor bioconsortium will be an enormous advantage to neuroendocrine tumor research. The analysis of tissue and associated clinical information will allow us to discover the molecular and genetic changes in neuroendocrine tumors, identify novel drug targets, and tailor treatment programs to the needs of patients. We are delighted that the Caring for Carcinoid Foundation is supporting this effort, and are proud to be a part of the consortium.

Daniel Chung, M.D., Massachusetts General Hospital

I am thrilled to participate in the NTBC for several reasons. Advances in treatments for carcinoids and neuroendocrine tumors have been slow, and the identification of new therapies depends upon a better understanding of the tumors on a molecular level.  The development of a tissue resource that maximizes the number of tumors available for analysis is an ideal way to reach this goal more quickly.  Equally important is a careful clinical characterization of each tumor, because no two tumors are alike and research efforts are more productive when tumors that are the most similar can be analyzed together.

James Yao, M.D., MD Anderson Cancer Center

The Caring for Carcinoid Foundation Multi-Institutional Bioconsortium represents an important effort in advancing our understanding of neuroendocrine tumors. Our efforts in recent years have shown that there are significant heterogeneity in neuroendocrine tumors of various sites in terms of epidemiology, genetics, and biologic behavior. It is likely that the development of neuroendocrine tumors is a result of complex interactions between genetics and environmental factors. While the tools available to scientists have advanced over the past decade, they actually present increasingly complex computational problems in order to understand the data. 

There are more then 1.8 million known subtle variations (Single Nucleotide Polymorphisms) in the human genome that makes each of us different but may also predispose some of us to certain diseases. There are often complex interactions between these genetic variations and environmental factors which ultimately determine who will get the disease. For example, not everyone who is exposed to a given carcinogen will develop cancer. Similarly, individuals with similar genetic makeup may not get the same disease if they have different environmental exposures. Today’s high throughput techniques allow us to ask over 1 million questions from a single sample about these genetic variations. Thus, if we looked at these variations in a small number of patients, we would have very little power to detect subtle differences that may predispose patients to develop neuroendocrine tumors.

This means we must work together to have the best chance for success. Member institutions of the bioconsortium will join forces to collect the much needed data and biospecimens to make this meaningful research possible. Our goal would be to work together to collect clinical, epidemiological, and risk factor data that will enable large scale collaborative research. 

Diane Reidy-Lagunes, M.D., Memorial Sloan Kettering Cancer Center

I decided to join the NTBC because I believe collaboration is critical in allowing us to find better treatments for this disease. Neuroendocrine tumors pose a significant challenge because it is a rare tumor that can vary in its behavior and degree of aggressiveness. In addition, there is a lack of standard approaches for treatment. It is only through such teamwork that scientific advancement will proceed. A better understanding of NET biology is urgently needed, with emphasis on molecular genetics. Better symptom control and understanding of the hormone related symptoms are also vital in improving quality of life in our patients with NET.

Through the clinical history, pathology, and blood samples of NTBC, I believe we will be able to identify genes and molecular markers as well as possibly unravel the mechanisms that lead to the development of neuroendocrine tumors. It is my hope that this information will enable us to identify new and better treatments for our patients.

Pamela Kunz, M.D., Stanford Cancer Center

The Stanford team is excited to be part of the neuroendocrine tumor bioconsortium as spearheaded by the CFCF.  This consortium has brought together leaders in neuroendocrine tumor research and will generate an extensive repository of clinical information, tissue and blood.  Given that neuroendocrine tumors are rare - it is difficult for an individual or one institution to learn enough about these tumors.   It is only through this collaborative effort that we will learn more about the epidemiology and genetics of these rare diseases.  With this information, we hope to design rationale clinical trials using novel agents to treat neuroendocrine tumors.  CFCF should be applauded for their commitment to research.  We feel fortunate to part of the consortium.

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