2010 E-Update Number 19
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In this Issue
International Clinical Trials
Nancy Lindholm Blogs
FDA Motions to Revoke Avastin's Approval
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CFCF is pleased to announce that this E-Update is supported by Novartis Pharmaceuticals Corporation
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Join iWalk for Carcinoid to Support the carcinoid and neuroendocrine community! Without leaving your home, putting on your sneakers, or spending any money, you can make a difference. CFCF can receive up to $10,000 from Novartis Pharmaceuticals Corporation that will enable scientific research that in pursuit of a cure! Click here to start iWalk-ing!
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Survivor Stories
 
Submitted 11/2010
 
CFCF is honored to present Survivor Stories. They reflect remarkable courage and determination. Thank you to our Survivors for sharing their courage and words of hope with other patients.

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Caring for Carcinoid Foundation
198 Tremont Street, Box 456
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www.caringforcarcinoid.org
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International Collaboration Essential for Rare Cancer Clinical Trials

On December 10, the National Cancer Institute (NCI) and the American Society of Clinical Oncology convened a meeting to explore ways to collaborate across borders on clinical trials for rare cancers. The meeting brought together nearly 100 representatives from 75 institutions, including the National Institute of Health's Office for Rare Disease Research, the US Department of Health and Human Services, and the Food and Drug Administration.


According to Dr. Jack Welch of NCI's Clinical Investigations Branch, "International trials for rare cancers offer many advantages over separate trials done in different countries or regions. By bringing patients together, international trials can accrue faster, and they offer lower collective administrative costs, shared infrastructure, centralized resources, and use of existing networks."


However, international clinical trials face a number of unique challenges including discrepancies in regulatory requirements, intellectual property concerns, restrictive contractual agreements, and the coordination of operations between organizations. These challenges may be overcome through careful planning, frequent communication, and cooperative collaboration.


Earlier this year, CFCF's Executive Director, Lauren Erb, spoke on behalf of neuroendocrine tumor patients at the FDA public hearing on "Considerations Regarding Food and Drug Administration Review and Regulation of Articles for the Treatment of Rare Diseases." Lauren argued that novel approaches are necessary to develop effective treatment options for neuroendocrine tumors. International clinical trials represent an opportunity to benefit the worldwide rare disease community by most efficiently advancing science and facilitating treatment development. Click here to read Lauren's speech to the FDA; click here to view her slide presentation.


Click here to view the full NCI Cancer Bulletin, "Statistical Strength in Numbers: International Clinical Trials for Rare Cancers".

CFCF Founder Shares Her New Year's Resolution in Her Latest Blog
In her latest blog, CFCF Founder Nancy Lindholm reflects on 2010 and shares her resolutions for the new year. Nancy states, "Studies show that one of the strongest sources of health and happiness is a relationship/commitment-to a partner, friend, pet or cause over a sustained period of time. I appreciate that more and more. My resolution is to continue my dedication to those people and causes that I value."

 

Nancy talks about her long and dedicated relationship with her beloved English bulldog, Izzy. Click here to read Nancy's blog.

FDA Motions to Rescind Avastin's Approval for Breast Cancer Treatment 
The U.S. Food and Drug Administration (FDA) is moving to revoke Avastin's approval for the treatment of breast cancer. This action was taken in light of recent studies suggesting that Avastin does not extend survival among breast cancer patients and that serious side effect may outweigh its potential benefits. Unrelated to the FDA's decision, the drug carries high costs. Click here to learn more.

CFCF's Executive Director, Lauren Erb, chronicles the controversy surrounding Avastin in her recent blog. Click here to read Lauren's blog.

All patients should discuss any questions or concerns regarding Avastin or any potential treatment or clinical trial with their physician. For help in finding a physician well-versed in treating neuroendocrne tumor patients please contact the Caring for Carcinoid Foundation at 617.848.3977.
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