Where does the money go for research?

Marion
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
Xxooo

eli…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.htm

The 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,
Marion

Pam…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,
Marion

eli….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,
Marion

I would like to know the same.

I 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,
Marion

Thanks, 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,
Marion