Caring for Carcinoid Foundation - Research Action Plan

Today, carcinoid research receives very little NIH funding
Today, carcinoid research is not well coordinated at the national and international levels
Today, carcinoid research is not well integrated between the scientific community, pharmaceutical industry, and government

Therefore, we created an aggressive Research Action Plan based on our:

Board of Scientific Advisors - guidance from highly esteemed leaders in cancer research
Research Road Map - 3 steps to unlock the genetic causes of carcinoid and develop novel, targeted therapies
Research Symposium - annual research symposium to discuss our latest findings and agree on the urgent priorities for carcinoid research

CFCF Collaboration Model

The Caring for Carcinoid Foundation (CFCF) believes in a collaborative approach to discovering a cure for carcinoid. Therefore, we are working hard to integrate five groups into one team:

Patients
Doctors
Researchers
Pharmaceutical Companies
Government (NCI, NIH, FDA, and Congress)

Everyone has a critical role to play, and we welcome your participation. Together, we will work as one team to discover a cure for carcinoid.

Action #1: Launch a Carcinoid BioBank

Fundraising Target: $1,500,000

Why Urgent

A biobank is necessary to discover a cure for carcinoid. However, no carcinoid biobank exists.

A biobank is a collection of biological and clinical data submitted by patients. It enables researchers to apply the most advanced technologies of genomic and proteomic research. A biobank is a critical underpinning of the genetic research paradigm.

Anna D. Barker, Ph.D., Deputy Director of Advanced Technologies and Strategic Partnerships at the National Cancer Institute (NCI), states in "Biospecimens: The Bridge to Personalized Medicine":

"It is clear that we are living on the cusp of unprecedented change in cancer medicine.

The shift from the traditional biomedical world, in which we slowly and painstakingly seek to understand the origins of disease--and use trial and error methods to treat patients--is giving way to a new paradigm. ... However, fully realizing the promise of this new era of medicine will not be easy; especially when it comes to what is perhaps the most critical enabler of genomics-based research--human biospecimens. ...

As we seek to unlock the mysteries of cancer and other diseases, biospecimens represent the bridge between two key resources: the vast amounts of emerging molecular data and the wealth of medical data that exists in patient histories and clinical outcomes. ...

At stake is the pace--and the ultimate success--of our shift towards truly personalized medicine, and the improved diagnostics and therapeutics that will help us to eliminate death and suffering from cancer and other devastating diseases in the coming years."

Therefore, it is urgent to launch a biobank in order to eliminate death and suffering from carcinoid.

Objective

Our objective is to launch the world's first carcinoid biobank:

To collect biological and clinical data from carcinoid patients
To link the data across leading cancer research institutes
To support cutting-edge genomic and proteomic carcinoid research

If we achieve our fundraising target of $1,500,000, we will move ahead with launching the carcinoid biobank.

Key Updates

December 2006

The Caring for Carcinoid Foundation decided on key design principles for the carcinoid biobank. These design principles are intended to unite the carcinoid community by:

Welcoming participation by all carcinoid patients

Encouraging new projects by all carcinoid researchers

Sharing results with the entire carcinoid community

Setting high standards for quality and transparency

Action #2: Create a Carcinoid Tissue Microarray

Fundraising Target: $150,000

Why Urgent

A tissue microarray is necessary to discover a cure for carcinoid. However, no complete carcinoid tissue microarray exists.

The National Cancer Institute states in "Microarray Technology" that tissue microarrays are critical to cutting-edge cancer research:

"Thanks to the human genome map, researchers can study the expression and function of every gene in the body. But how can they simultaneously analyze the expression of 30,000–50,000 genes? The answer lies in microarray technologies. ...

It is now possible to place the entire human gene complement on one slide. DNA microarrays are a pivotal and powerful research tool; findings made possible by this tool will lead to more effective and radically new ways to treat and cure cancer."

Furthermore, the peer-reviewed article, "Demystified...Tissue Microarray Technology", states:

"Several 'high throughput methods' have been introduced into research and routine laboratories during the past decade. Providing a new approach to the analysis of genomic alterations and RNA or protein expression patterns, these new techniques generate a plethora of new data in a relatively short time, and promise to deliver clues to the diagnosis and treatment of human cancer. ...

Tissue microarray technology is one of these new tools. It is based on the idea of applying miniaturization and a high throughput approach to the analysis of intact tissues. The potential and the scientific value of tissue microarrays in modern research have been demonstrated in a logarithmically increasing number of studies."

Objective

Our objective is to create the world's first complete carcinoid tissue microarray:

To provide an essential tool for cutting-edge carcinoid research
To benefit a large number of leading carcinoid researchers

If we achieve our fundraising target of $150,000, we will issue a Research RFP to create the carcinoid tissue microarray.

Action #3: Perform a Large-Scale Genome Study of Carcinoid

Fundraising Target: $1,500,000

Why Urgent

A large-scale genome study promises to unlock many of carcinoid's mysteries.

Leading scientists funded by the Caring for Carcinoid Foundation have hypotheses about the genes that contribute to the growth and development of carcinoid. These genes may represent targets for novel, targeted therapies. Our next step is to perform a large-scale genome study of carcinoid and related NET to validate these hypotheses.

Large-scale genome studies are the centerpiece of cutting-edge cancer research. The National Cancer Institute (NCI) and National Human Genome Research Institute (NHGRI) are spearheading this effort. In December 2005, NCI and NHGRI launched a "comprehensive effort to accelerate our understanding of the molecular basis of cancer through the application of genome analysis technologies, especially large-scale genome sequencing." This joint effort is called The Cancer Genome Atlas.

According to Elias A. Zerhouni, M.D., Director of the National Institutes of Health (NIH):

"Now is the time to move forward with this pioneering initiative. Thanks to the tools and technologies developed by the Human Genome Project and recent advances in using genetic information to improve cancer diagnosis and treatment, it is now possible to envision a systematic effort to map the changes in the human genetic blueprint associated with all known forms of cancer.

This atlas of genomic changes will provide new insights into the biological basis of cancer, which in turn will lead to new tests to detect cancer in its early, most treatable stages; new therapies to target cancer at its most vulnerable points; and, ultimately, new strategies to prevent cancer."

It is urgent to perform a large-scale genome study to move rapidly toward better diagnosis, treatment, and prevention of carcinoid.

Objective

Our objective is to perform the world's first large-scale genome study of carcinoid:

To diagnose carcinoid earlier
To develop new, targeted therapies for carcinoid
To prevent future occurrences of carcinoid

If we achieve our fundraising target of $1,500,000, we will issue a Research RFP to perform the large-scale genome study of carcinoid.

Key Updates

May 2009

The Caring for Carcinoid Foundation has launched the first large-scale genome study of carcinoid tumors led by Dr. Matthew Meyerson, M.D., Ph.D., Director of the Center for Cancer Genome Discovery at Dana-Farber Cancer Institute, and Associate Professor of Pathology at Harvard Medical School. CFCF selected Dr. Meyerson's proposal for this project because he and his team of collaborators have consistently been at the forefront of genomics.

Action #4: Discover New Carcinoid Biomarkers

Fundraising Target: $250,000

Why Urgent

There are no carcinoid biomarkers to accurately predict when carcinoid will occur, prognosticate its course, and measure its endpoints. As a result, carcinoid diagnosis comes too late, treatments are not individualized, and outcomes are not accurately measured.

The National Cancer Institute (NCI) asserts that biomarkers are critical to cutting-edge cancer research. The NCI symposium, "Clinical Proteomics and Biomarker Discovery in Cancer Research", stated:

"An effective platform for clinical biomarker discovery would revolutionize clinical oncology. Such a platform would enable detection of disease early, when it is curable. It would also provide a means of distinguishing quickly those patients who are responding to a given therapy from those who are not, as well as yielding perhaps the ultimate preventive tool capable of identifying those at risk for cancer and even predicting their response to prevention interventions."

It is urgent to discover new carcinoid biomarkers to achieve this revolution in the diagnosis, treatment, and prevention of carcinoid.

Objective

Our objective is to discover new carcinoid biomarkers:

To predict when carcinoid will occur
To prognosticate the course of each carcinoid patient
To measure the endpoints of carcinoid

If we achieve our fundraising target of $250,000, we will issue a Research RFP to discover new carcinoid biomarkers.



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CFCF Headlines

Click HERE to read Nancy Lindholm's new blog.

Click HERE to read Lauren Erb's recap of CFCF's recent Research Symposium.

Click HERE to read "Living Well with Carcinoid", a nutritional guide by Jodi Newson, MS, RD, CSO.

Click HERE to read the CURE review of CFCF Board Member Carrie Host's cancer memoir, "Between Me and the River".

Click HERE to read Carrie Host's short essay on healing, titled "The Light Side of Darkness".

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