Where does the money go for research?
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- This topic has 17 replies, 6 voices, and was last updated 12 years, 4 months ago by marions.
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July 2, 2012 at 2:33 am #62400marionsModerator
Eli and Lisa….you are welcome.
To answer your question, Lisa:
In 2011, The Cholangiocarcinoma Foundation funded two grants through the Conquer Cancer Foundation, a division of ASCO (American Society of Oncology): the Young Investigator Award in the amount of 60 thousand dollars and the Long Term International Fellowship Award for 50 thousand dollars. The Young Investigator Award was presented to Dr. Flavio Rocha.
We require intermittent updates from our grant recipients. Dr. Rocha’s research interest is available for view on our site:
http://www.cholangiocarcinoma.org/media.htm
At present we are in the process of determining the next grant recipients.
Hugs,
MarionJuly 1, 2012 at 5:31 pm #62385lisacraineSpectatorMarion
Thank you for all the information. I hope you will help us with where our research dollars go after our fundraiser. When I had my first liver resection, they kept a large sample of the tumor. My doctor has it at a laboratory doing research on the tissue.
Thanks for being such a great source of knowledge.
Lisa
XxoooJuly 1, 2012 at 4:51 pm #62384EliSpectatorMarion, thank you so much again. Tissue collection, tissue banking and tissue availability are hugely important. We are indeed fortunate to witness the advancements made in these areas.
July 1, 2012 at 6:36 am #62399marionsModeratoreli…you are welcome. Be assured that contamination issues have been made a priority within the NIH, NCI, FDA, and research community. We will keep track of the ongoing developments.
What we are fortunate to witness is the way research is to be conducted in the near future and the positive effect it has on our disease.
Here is an example in re: to research and tissue availability
Tissue is retrieved (from patients) within the medical institutions.
In order to conduct research, investigators have to request grant money from either, the NIH, NCI, Pharmaceutical companies or even disease specific foundations such as ours, or other sources.
Sara explains in her interview with OncUViewTV, ASCO, 2011 why we choose to offer two grants; one to a young investigator from Sloan and another to a researcher from MD Anderson.
http://www.cholangiocarcinoma.org/media.htmThe real issue is though, that other researchers not working within a specific institution are not able to conduct research because; they don’t have the availability of the needed tissue. Why is that? Because it is owned by the institution that has retrieved it and they will want to keep it in order to receive grants and recognition.
This is about to change. The purpose is to broaden research activities.
Tissue repository banks are in the process of collecting tissue from various sources (other than their own institutions) and then make it available to qualified researchers regardless of whether they are affiliated with the institution storing the retrieved tissue. The UK has already implemented such a program. I don’t know though what the criterion entails? For example: Do researchers from other countries have access to the specimen?In order for our disease to be identified on a molecular level, we need things to come together: money, tissue, and researchers.
Hugs,
MarionJuly 1, 2012 at 4:51 am #62398EliSpectatorMarion, thank you so much for the very thorough reply about cell contamination issue. It is very, very informative. I’m glad to hear it’s a hot topic at the medical conferences you attend. Medical research community has to make it a top priority to address this problem.
July 1, 2012 at 4:14 am #62397marionsModeratorPam…I just wanted to mention that your request of explaination re: research funding of our foundation has not been ignored. As soon as the board members can gather for the next phone conference (on vacation and other, personal happenings} the issue will be clarified and posted on this site for all to see. Just wanted you to know.
Hugs,
MarionJuly 1, 2012 at 3:41 am #62396marionsModeratorLisa…I wish for your event to become a major success. Please keep us posted. We love success stories.
Hugs,
MarionJuly 1, 2012 at 3:38 am #62395marionsModeratoreli….finally had a chance to read the article mentioned. Cell contamination is a hot topic at all conferences I attend; in fact it was mentioned at the DIA Advocate Fellowship program. It has gained moment due to the increased interest in the much needed tissue repository banking. Although NIH protocol is in place for the proper handling of tissue and/or blood samples unfortunately we continue to see contamination in a large percentage of the study material.
Recently I spoke with a physician from a major medical/research institution addressing the above mentioned concern. They are in the process of establishing a biliary tissue bank however; due to the fear of contamination they will restrict research to the materials collected within this institution until the issue can be resolved. However; in order to accelerate research especially for rare diseases the volume of accessible tissue has to be increased. Additional specimen need to be collected from various, available, sources, be stored and made available to a variety of researchers including those not affiliated with the specific institution.
This is widely recognized and ready to be implemented, but the major problem encountered is the collection of tissue from sources other than the institution providing the tissue bank. Unfortunately specimen can become contaminated anywhere along the process of retrieval, handling, storing, shipping and receiving of such research material.I am positive that further actions will be taken and that it will be addressed by all including my fellow advocates.
I also wanted to add that after years of legal battles the issues of proprietorship has been resolved. It is determined that any body part including tissue and blood (once removed from the patient) becomes property of the medical institution. What does that mean for us? Research can be conducted without prior patient permission.
Hugs,
MarionJune 28, 2012 at 6:20 pm #62394lisacraineSpectatorWe have created a fund called Craine’s Cholangiocarcinoma Crew Fund through the Akron Community Foundation. All of our funds will go to research that is overseen by their board of directors with imput from the Cholangiocarcinoma Foundation and physicians. 100 percent to research. We are starting out with a marathon….check out our website
http://Www.crainescancercure.org
Thanks, LisaJune 26, 2012 at 10:18 pm #62393tiff1496MemberI would like to know the same.
June 26, 2012 at 9:43 pm #62392gavinModeratorThank you for this Marion! As always, all of your efforts and the great work that you do is so much appreciated by everyone. Now, get some sleep and have a safe trip home!!! Then put your feet up for a bit and relax!
Hugs,
Gavin
June 26, 2012 at 2:20 am #62391marionsModeratorI wish I could comment more, but I am totally exhausted. This DIA Fellowship is not for the weak!!!! But I believe that we will greatly benefit from the exposure. My return flight from Philadelphia to San Francisco can’t come soon enough although, it will have to wait until Thursday afternoon.
Hugs,
MarionJune 26, 2012 at 2:12 am #62390EliSpectatorThank you, Marion.
June 26, 2012 at 2:01 am #62389marionsModeratorThanks, Eli, for bringing this to my attention. Upon my return to California, I will take a closer look at the article and then consult with the physicians.
Thanks again,
Hugs,
MarionJune 26, 2012 at 1:02 am #62388EliSpectatorMarion,
While we are on the subject of research funding by the foundation, I want to bring this article to your attention:
http://www.sciencedaily.com/releases/2012/06/120621102056.htm
I was very upset when I read the article, but that’s not the point.
This paragraph got me thinking:
Quote:“In the past, the technology to check cell lines didn’t exist and so you can’t really blame past researchers. But today it’s cheap, it’s easy and the technology is widely available. There’s no excuse to experiment on cells without first discovering what you’re experimenting on. We’ve suggested that journals start requiring verification of cell lines as a prerequisite of publishing,” says Andrew Bradford, PhD, CU Cancer Center investigator and associate professor in the CU School of MedicineThe bold font is mine. I wonder if CCF should start requiring the same as a prerequisite for research funding? I understand that imposing such a requirement would be rather controversial. I see some pros as well as some cons.
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