Clear Cell Sarcoma Foundation’s Post

Name: Dr. Jones on CCS tumor tissue for rare cancers | Clear Cell Sarcoma Foundation posted on the topic | LinkedIn
Uploaded: 2024-07-13T17:10:54.477Z
Channel: Clear Cell Sarcoma Foundation

Clear Cell Sarcoma Foundation

92 followers

3mo

Did you know that getting tumor tissues from patients is one of the most critical issues in rare cancers? Hear from Dr.Kevin Jones, a long-time supporter of Clear Cell Sarcoma Foundation and Division Chief of Sarcoma and Professor at Department of Orthopedics at University at Utah on how invaluable fresh(untreated) CCS tumor tissue can be in finding a cure for this ultra-rare cancer. Clear Cell Sarcoma Foundation (CCSF) is a partner of Pattern.org, a non-profit organization launched by Rare Cancer Research Foundation (RCRF) that enables cancer patients to directly donate their tumor tissue and medical data to high-impact research projects. To help us continue this partnership, please consider donating to support our cause at https://lnkd.in/epEPSwHm #ClearCellSarcoma #SarcomaAwareness #Sarcoma #HelpCureClearCellSarcoma #RareCancerAwareness

Transcript

So tissue is one of the critical issues in any rare disease, especially especially rare types of cancer. Because cancers are. Because because the way the cancers begin is as a unique event in certain cells in a person. That person does not carry. Any of the molecular important you know findings of the disease once the disease has been removed? So I know that that sounds a little circuitous, but. Cancer is not essentially a genetic disease where we carry the genes that cause it through our whole bodies most of the time. There are there are exceptions to that, and a few a few familial types of cancer. But clear cell sarcoma is virtually never associated with familial cancer type, so that means that the only place where the specific molecular drivers of that cancer are present is in the cancer cells themselves. Those cancer cells, once they've been radiated, once they've been treated with aggressive chemotherapy, once they've been removed and put into, you know, pathology fixation solutions. They are in many ways no longer useful for. For the types of research that we can do on fresh tissue. They are still important and they and they still can be, you know, archived in some of those other states. If they've, if they've already been through the pathology solutions, that's OK. We still would like to have those kinds of tissues collected and assembled into into a set basically so that we can not only have clinical data from patients, but we can have actual tissue data and all the data we can derive from that tissue in terms of stains that we can use on it. And by immunohistochemistry, which is a way of testing for a specific protein in a tissue or some of the molecular tests that we can do on even tissue that has been processed through. To formulate and embedded in paraffin, which is which is what happens to tissues when when they're treated by pathologists. Most of the time, even these tissues can be used to. To study the molecular drivers of clear cell sarcoma. And so even a registry or a Bank of those kinds of tissues can be very, very important. But what would be even better is anyone who can connect with Sara's cure and be able to make sure that their tissue is processed appropriately from the beginning. That's even better. I mean, any, any time when we can get fresh frozen tissue samples, which many hospitals are. Able to do if they know to do it before the surgery. That can be very critical for. For, you know, any type of research can use that kind of kind of tissue. It's invaluable. I I would have to say it is one of the biggest limitations in something like clear cell sarcoma. So I recently completed a study. With. Trying to understand the the molecular drivers of clear cell sarcoma other than the main driver which we think of as this WSR 1ATF1 fusion gene. But there are other drivers that we can detect by looking at samples and. We were only able to put together a series of patients. From. Samples that were basically dating back 20 years and have been embedded in paraffin by a very. A very wise pathologist who was basically collecting these these cases over many years as they were sent to him in consultation. Every case he would, he would, he would save a few slides that were unstained and we were able to use these tissues to try to understand some of the very basic drivers of clear cell sarcoma. However, we would have much preferred to have had frozen tissues if we could have had, you know, even more than two or three, which is about all that we could find at the time. So I, I think a tissue banking effort or an, an effort to register tissues up front for patients, any patients who actually connect with serious care before they have their surgery, that would be an invaluable resource.

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Clear Cell Sarcoma Foundation’s Post

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