The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

Current Research Grants

Personalized Medicine for Neuroendocrine Tumor Patients

With funds raised by Team CFCF’s Cycle for Survival riders, Diane Reidy-Lagunes, MD, and her team will use both molecular and radiologic approaches to develop biomarkers to personalize care for patients with neuroendocrine tumors.  In particular, Dr. Reidy will focus on biomarkers to predict patient response to targeted therapies.

Dr. Diane Reidy-LagunesPersonalized cancer care is increasingly promoted for a simple reason: Not all tumors behave the same, even when they share the same origin.  Genetic errors, or mutations, are the basis of cancer.  However, tumors also evolve as they grow over time, acquiring new mutations that turn them more aggressive, and less responsive to conventional therapies.  Understanding the individual mutations that drive a tumor to grow can help us find the most effective drugs available with the fewest side effects.” – Dr. Reidy-Lagunes

Dr. Reidy-Lagunes is a medical oncologist who specializes in treating patients with neuroendocrine tumors and gastrointestinal malignancies.  Her research focuses on developing methods to integrate molecular-based, targeted therapies into the treatment of neuroendocrine tumors, as well as designing and conducting clinical trials to improve treatment options for patients with neuroendocrine tumors.

Institution: 

Memorial Sloan Kettering Cancer Center

Investigator: 

Diane Reidy-Lagunes, MD

Amount: 
2012 Team CFCF Cycle for Survival Proceeds
Duration: 
1 year
Research Objectives: 

   Develop molecular biomarkers to 1) predict patient response to targeted therapies and 2) stratify pancreatic neuroendocrine tumor patients for treatment with targeted therapies or traditional chemotherapy.

   Study a new imaging technique to monitor the biology of neuroendocrine tumors and determine if it can be used as a biomarker for patient response to targeted therapies.

Abstract: 

Through a collaboration between clinical oncologists, radiologists, and basic scientists, the long-term goal of our research is to develop biomarkers that can lead us to personalized cancer care for pancreatic neuroendocrine tumor patients. A biomarker is essentially a blueprint that allows us to look inside a tumor. If we understand the vulnerabilities of a specific tumor, we can then target them with the most appropriate therapies. A biomarker can be in the form of a blood test, a genetic map, or an imaging pattern.  Our team hopes to approach pancreatic neuroendocrine tumors with both a molecular and a radiological approach.

Our molecular approach consists of finding mutations in genes that drive a tumor to grow. Finding every possible genetic mutation in cancers is costly and ineffective. Instead, we will focus our search on selected mutations that are believed to be most important to drug response in pancreatic neuroendocrine tumors. By targeting only a few mutations, we can do this quickly and cost effectively. By identifying individual patients’ mutation profile, we hope to develop a molecular biomarker that can help us find patients who are likely to respond to conventional drugs and distinguish those who may need more experimental therapy.

Our second approach is based on magnetic resonance imaging. MRIs are routinely used to monitor patient progress following therapy, to see how tumors grow or shrink over time. Our team of radiologists and medical physicists are collaborating on new imaging tools used during MRIs to monitor the biology of tumors. As opposed to the molecular approach, this technique provides a bird’s eye view of a tumor.  It has provided insight into the biology of many different cancers, and can sometimes predict response before a specific treatment is started.

The technologies for both our molecular and imaging approaches already exist, but their implementation require expertise and time from dedicated research staff at Memorial Sloan-Kettering Cancer Center. Our researchers are motivated, but they also require funding for laboratory equipment and tests. With your support, and a true collaborative effort from our staff, we hope to meet the challenge of personalized cancer care in pancreatic neuroendocrine tumor. Our methods, once validated, will be applicable to other types of neuroendocrine tumors as well.

Transcriptome and Methylome of Pancreatic Neuroendocrine Tumors With and Without ATRX/DAXX Mutations

Dr. Nickolas PapadopoulosWith prior funding from CFCF, Nickolas Papadopoulos, Ph.D., and his team published the results of the first large-scale genome sequencing study of pancreatic neuroendocrine tumors in Science.

Specifically, Dr. Papadopoulos announced the discovery of mutations in two genes (DAXX and ATRX) not previously associated with cancer. Further study of these genes suggests they may play a broader role in the development of not only neuroendocrine cancers but certain types of adult and pediatric brain tumors as well. Identification of mutations within these genes suggests a novel approach to neuroendocrine cancer diagnostics and treatment by targeting epigenetic processes.

DAXX and ATRX are epigenetic regulators, meaning they determine which genes are turned on or off under specific conditions in a cell. While genes contain the instructions for assembling proteins, it is through epigenetic regulation that cells are able to control whether those proteins are actually produced. Mutations within these epigenetic regulating genes can cause them to malfunction, leading to the inactivation of a cancer-suppressing gene, or activation of a cancer-driving gene.

To build on these compelling results, CFCF has awarded a second research grant to Dr. Papadopoulos to explore further the role of DAXX and ATRX mutations in neuroendocrine tumors.

Click here to support Dr. Papadopoulos' research

Institution: 

Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University

Investigator: 

Nickolas Papadopoulos, Ph.D.

Amount: 
$300,000
Duration: 
2 Years
Research Objectives: 

• To determine the epigenetic landscape of pancreatic neuroendocrine tumors by studying the gene expression and methylation patterns of pancreatic neuroendocrine tumors with or without DAXX or ATRX mutations.
• To develop novel therapeutic approaches for patients with neuroendocrine tumors.
• To study the role of epigenetic regulation in neuroendocrine cancer development.

Abstract: 

Virtually all the biologic properties of cancer cells are governed by the genetic changes present in them. With the help of CFCF, we have defined the genomic landscapes of pancreatic neuroendocrine tumors. The most intriguing and novel components of these landscapes were mutations of genes called DAXX and ATRX. These genes are master regulators of chromatin packaging – proteins that surround DNA in the nucleus of the cell and determine which genes are turned on or off under specific conditions. In the next phase of our work, we will explore which genes are actually turned on or off in pancreatic neuroendocrine tumors containing mutations of either of these two genes. The long-term objective is to use this information to develop new therapeutic approaches based on a better understanding of these commonly altered pathways in pancreatic neuroendocrine tumors.

Molecular Analysis of Neuroendorine Tumor Survival

In this project, Matthew Kulke, M.D., will utilize his extensive Neuroendocrine Tumor Biobank to identify and then confirm predictors of survival in patients with neuroendocrine tumors.

kulke

Dr. Kulke will evaluate genetic variation and protein expression in key molecular pathways including the angiogenesis and mTOR signaling pathways. This project will not only inform clinical management of patients but also has the potential to personalize medicine, by identifying markers to select patients for specific targeted therapies, and identify new treatment targets.

Dr. Kulke’s research project is supported by the 2011 Caring for Carcinoid Foundation Pan-Mass Challenge Team.

Click here to support the project.

Institution: 

Dana-Farber Cancer Institute

Investigator: 

Matthew Kulke, M.D.

Amount: 
2011 Team CFCF Pan-Mass Challenge Proceeds
Duration: 
2 years
Research Objectives: 
  • To evaluate whether genetic variation and protein expression in key molecular pathways affect survival in patients with neuroendocrine tumors
  • To identify new treatment targets for patients with neuroendocrine tumors.
Abstract: 

The incidence of neuroendocrine tumors is increasing, and the annual prevalence of these malignancies is estimated to exceed 100,000 individuals in the United States. The identification of genetic and molecular prognostic factors for neuroendocrine tumors was identified as a key research priority at a National Cancer Institute summit meeting in September, 2007. Currently used general prognostic factors do not accurately predict the highly variable clinical course of patiesnt with neuroendocrine tumors, some of whom life for decades while others pursue a course that is rapidly fatal.

Our proposed studies leverage the resources of a large databae of neuroendocrine tumor patients and specimens, developed by our PI. Our aims are informed by recent preclinical and clinical data suggesting key roles for angiogenesis and mTOR signaling, as well as by a previous analysis of genomic aberrations in neuroendocrine tumors. We propose a two-stage candidate SNP (single nucleotide polymorphism) approach to identify and then confirm genetic predictors of survival in key molecular signaling pathways. The results of our studies will inform our understanding of neuroendocrine tumor prognosis, and biology. Our studies will also potentially identify new therapeutic targets for these diseases.

Suppression of Neuroendocrine Tumors via Epigenetic Regulation

Dr. Hua is one of the recipient's of the 2011 Caring for Carcinoid Foundation - AACR Grants for Carcinoid Tumor and Neuroendocrine Tumor Research. CFCF is pleased to announce the first cohort of winners of this award issued in partnership with the American Association for Cancer Research to: advance the understanding of neuroendocrine tumors; elucidate the mechanisms of currently available therapies; and identify new treatment targets for neuroendocrine tumors.

Hua photo“This project suggests a novel treatment approach by targeting a new signaling pathway to treat carcinoid and neuroendocrine tumors. We are well-poised to…unravel the pathway as a new potential target to treat neuroendocrine cancers...” – Dr. Xianxin Hua

Dr. Hua’s lab has expertise in studying the function of oncogenes and tumor suppressor genes, including menin, a protein encoded by the multiple endocrine neoplasia type 1 (MEN1) gene. Patients with MEN1 syndrome have a mutation in the MEN1 gene.

Patients with MEN1 syndrome may develop pancreatic neuroendocrine and bronchial carcinoid tumors (among other tumors).  We also know from other CFCF-funded research that sporadic pancreatic neuroendocrine tumors can have mutations in the MEN1 gene.

Dr. Hua’s lab has found that menin appears to suppress a pro-proliferative signaling pathway via protein methylation. Because menin mutations are linked to pancreatic neuroendocrine tumors, his findings suggest that targeting the menin-regulated signaling pathway may be crucial for treating neuroendocrine tumors. This goal of this project is to unravel the crucial role of the menin-regulated cascade in the maintenance of neuroendocrine tumors, underscoring the pathway as an important target for therapy.

By studying menin Dr. Hua seeks to uncover a new treatment strategy for patients with neuroendocrine tumors.

Institution: 

Abramson Cancer Research Institute, University of Pennsylvania

Investigator: 

Xianxin Hua, MD, PhD

Amount: 
$250,000
Duration: 
Two years
Abstract: 

The goal of this proposal is to develop novel modalities that will be useful for treating pancreatic neuroendocrine tumors, by targeting the pathway that is regulated by menin, a tumor suppressor that is mutated in patients with the inherited Multiple endocrine neoplasia type I (MEN1) syndrome.

 

Oncolytic Viral Therapy for Neuroendocrine Cancers

Dr. Rudin is one of the recipient's of the 2011 Caring for Carcinoid Foundation - AACR Grants for Carcinoid Tumor and Neuroendocrine Tumor Research. CFCF is pleased to announce the first cohort of winners of this award issued in partnership with the American Association for Cancer Research to: advance the understanding of neuroendocrine tumors; elucidate the mechanisms of currently available therapies; and identify new treatment targets for neuroendocrine tumors.

Rudin“By studying the Seneca Valley Virus, we hope to define a novel, targeted therapeutic strategy for patients with neuroendocrine cancers, in particular more aggressive neuroendocrine cancers such as atypical carcinoid.” – Dr. Charles Rudin

Dr. Rudin’s laboratory focuses on the development of novel cancer therapeutics including the Seneca Valley Virus, a small RNA virus that can selectively infect and destroy certain cancers, especially cancers with neuroendocrine features. Dr. Rudin developed and directed the first in-human phase 1 clinical trial of the Seneca Valley Virus (SVV-001). Neotropix, a biotechnology company based in Malvern PA, is currently developing SVV-001 commercially under the trade name NTX-010.

This innovative project will study the only anti-cancer virus with selective affinity for neuroendocrine tumor cells and define the population of neuroendocrine patients most likely to respond to SVV-001.

Specifically, Dr. Rudin and his team propose to elucidate the determinants of Seneca Valley Virus permissivity into neuroendocrine tumor cells.  This information will enable molecular profiling of patient’s tumors to focus future clinical development on the patient population most likely to benefit.

This research is both exciting and innovative: 

  • It represents a novel, targeted treatment strategy for neuroendocrine cancer patients;
  • It offers a personalized medicine approach to guide future clinical development;
  • Patients with the most aggressive neuroendocrine cancers may benefit most!
Institution: 

Johns Hopkins University School of Medicine

Investigator: 

Charles M. Rudin, MD, PhD

Amount: 
$250,000
Duration: 
Two years
Research Objectives: 
  • To define components of the SVV-001 viral entry pathway;
  • To explore determinants of productive cytolytic infection with SVV-001;

To allow future clinical trials of SVV-001 to target the patient population most likely to benefit from this approach.

Abstract: 

My research group has focused on the development of novel cancer therapeutics, both in the laboratory and in the clinic.  We have a particular interest in small cell lung cancer and other aggressive neuroendocrine cancers, including atypical carcinoid.  Standard approaches to aggressive neuroendocrine cancers have changed minimally over the past 20 years. Novel therapeutic concepts are critically needed for these relatively rare but deadly cancers.  My laboratory has been characterizing a novel picornavirus, SVV-001, which can selectively infect and destroy cancers with neuroendocrine differentiation.  SVV-001 demonstrates a broad spectrum of activity against neuroendocrine tumors: about 50% of small cell carcinoma lines are permissive for the virus, as are a variety of other aggressive neuroendocrine cancers.  The molecular and cellular determinants of SVV-001 permissivity have not been defined.  We are seeking to identify the mechanisms of SVV-001 tumor cell entry as well as other cellular determinants of susceptibility to viral infection and lysis, using both innovative approaches and strategies that have been successfully used in defining the biology of other picornaviruses such as poliovirus.  With the generous support of the Caring for Carcinoid Foundation and the American Association for Cancer Research, we will conduct a series of studies to define the basis of the selective tropism of SVV-001 for neuroendocrine tumors.  These studies may identify biomarkers of viral permissivity, which will help guide subsequent clinical application of SVV-001 in patients with advanced neuroendocrine tumors.  It is a terrific honor to receive this award in support of our work.

 

Mary Terese Hartzheim Award for Neuroendocrine Tumor Research

CFCF is funding a Young Investigator Award for NET research through the American Gastroenterological Association (AGA).  This Award is made possible by a partnership with the MTH Foundation.  The “Mary Terese Hartzheim Award for Neuroendocrine Tumor Research” is the first of its kind to attract young investigators to research the biology of NETs and the development of novel therapeutics for NETs.

To learn more about Mary Terese Hartzheim and the MTH Foundation please click here.

Institution: 

Massachusetts General Hospital

Investigator: 

Michael Choi, M.D.

Amount: 
$150,000
Duration: 
2 years
Research Objectives: 
  • Undercover molecular mechanisms involved in enteroendocrine cell differentiation and neuroendocrine tumorigenesis
Personal Statement: 

The technology of cellular reprogramming from the stem cell field offers us a novel method to investigate the neuroendocrine tumor (NET) biology.  We hypothesize that new insights will be gained by reprogramming cellular identity of both normal and tumor cells by forcibly expressing a correct set of transcription factors, genes that turn on or off other genes.  Such change in cellular identity could result in transdifferentiation where one cell lineage type changes to another or in dedifferentiation where cells acquire potential to become many different cell types, similar to stem cells.  Broadly, we propose to investigate the biology of endocrine cells and their counterpart NET cells by inducing transdifferentiation or dedifferentiation

This research plan will not only enhance molecular understanding of enteroendocrine cell and NET biology, but will also serve as a vehicle for me to successfully enter the field of NET research as an independent physician-scientist.  The Mary Terese Hartzheim Award will provide the means necessary for this critical transition in my research career.

Mouse Model Project Using Forward Genetics

Dr. Tuveson"The development of more effective treatment regimens for patients with carcinoid metastasis and carcinoid syndrome has been hampered by the lack of effective in vivo models, which recapitulate the disease process in humans." - Dr. David Tuveson

Dr. Tuveson's laboratory will use their expertise in forward genetics and mouse cancer modeling to mutagenize enterochromaffin cells (ECCs), enteroendocrine cells found in the digestive and respiratory tracts, to both generate models of NET and simultaneously identify genes and pathways that promote NET formation.

The lack of model systems that accurately recapitulate the behavior of neuroendocrine cancers has long been a significant hurdle to developing targeted treatments for patients.  This project has the promise to create faithful animal models; therefore, eliminating one of the barriers to treatment development.

Institution: 

Cancer Research UK, Cambridge Research Institute

Investigator: 

David Tuveson M.D., Ph.D.

Amount: 
$300,000
Duration: 
Two years
Research Objectives: 
  • To establish enterochromaffic cell specific creERT2 alleles 
  • To generate the first accurate mouse models of neuroendocrine tumors 
  • To identify genes and pathways that cause NET formation following transposon-mediated mutagenesis in adult enterochromaffic cells
Abstract: 

Patients with neuroendocrine tumors (including carcinoid) have few therapeutics options besides surgery and investigational agents, and this is a frustrating reality in my clinical practice when I encounter such patients. Currently, there is no suitable animal model that recapitulates the human diseases to allow the development of new medical interventions for NETs. Also, the cause of NET has been difficult to establish from previous studies of clinical specimens. In this application, I proposed to develop animal (mouse) models of NET by taking advantage of a new method of generating tumor models with "jumping genes" that are called transposons. Any NET that develop in such mice will then be studied to quickly determine the genes that cause NET, and this information will both be useful way to determine the cause of NET and to establish reproducible models of NET for the field. This proposal will involve the training of a new physician scientist to facilitate the development of an independent NET cancer specialist.

Carcinoid Cancer Genome Study

"Taking a closer look at these tumors allows us to learn critical information about the genetic landscape of this disease. Our study could achieve a real impact on the care of carcinoid patients." - Dr. Matthew Meyerson.

CFCF will initiate a large-scale genomic survey of carcinoid tumors led by Matthew Meyerson, M.D., Ph.D., Director of the Center for Cancer Genome Discovery at the Dana-Farber Cancer Institute. The goal of this study is to find novel targets for carcinoid treatment and to facilitate the development of new targeted therapies and better diagnostics for patients. This is the first genomic study of this magnitude for carcinoid tumors.

To read more on this ground-breaking project, click here & here.

Click here to support Dr. Meyerson's research project.

Institution: 

Dana-Farber Cancer Institute, The Broad Institute

Investigator: 

Matthew Meyerson, M.D., Ph.D.

Amount: 
$1.5 million
Duration: 
3 years
Research Objectives: 

 

  • To discover candidate oncogenes in carcinoid
  • To determine which candidate genes have oncogenic activity.
  • Long-term objectives: To indentify novel targets for carcinoid treatment and to facilitate the development of new targeted therapies
  •  

    Abstract: 

    DNA alterations in key genes cause cancer. This fact is more than academic, because targeted therapies that block the action of these altered genes can treat cancer. The first goal of this project is to indentify which genes are altered in carcinoid, by studying carcinoid DNA with the most powerful new methods available, and comparing these genes sequences to genes from normal tissue. The second goal is to decipher which of these genes can promote tumor growth. The long-term goal is to find new drugs that block the effects of carcinoid-causing genes and thereby kill carcinoid cells.

    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.

    Institution: 

    Dana-Farber Cancer Institute

    Massachusetts General Hospital

    MD Anderson Cancer Center

    Memorial Sloan Kettering Cancer Center

    Stanford Cancer Center

    Investigator: 

    Matthew Kulke, M.D.

    Daniel Chung, M.D.

    James Yao, M.D.

    Diane Reidy-Lagunes, M.D.

    Pamela Kunz, M.D.

    Amount: 
    $400,000
    Duration: 
    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
    Abstract: 

    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.

    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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