FAQs Neuroendocrine Tumor Tissue Donation

The need for tumor tissue in NETs

The Neuroendocrine Tumor Research Foundation is on a mission to fill the urgent need for more neuroendocrine tumor tissue for use in laboratory research. 

The tumor tissue is needed to support the NETRF Cell Line Project underway with Pattern.org and the Broad Institute.  

The Cell Line Project aims to expedite our molecular understanding of NETs and accelerate drug testing by increasing the tools and resources available to researchers.

Why do we need tumor tissue specimens?

Scientists use small leftover pieces of tumor tissue extracted during surgical or biopsy procedures to build tumor models. 

What is a tumor model? 

Researchers study cancer in the laboratory using tumor models. A model may be in the form of cells, tissues, or organoids; they serve as a substitute for humans in preclinical testing.  Models allow researchers to study the development and progression of neuroendocrine cancer, and to test new treatments before they are given to humans.

Why do we need a tumor model in NETs?

Models are a fundamental element of cancer research: the way lumber and cement are to a house. Models form the foundation upon which all other research rests. If ideas, concepts, or drugs can’t be studied in the laboratory, they cannot progress into clinical or human studies. Medical research starts in the laboratory on models. 

How do you donate tumor tissue?

Patients can donate tumor tissue through Pattern.org.  Pattern.org links to an electronic consent form where patients can learn more about contributing. Should a patient decide to provide consent, Pattern.org arranges for excess tumor tissue to be shipped from a patient’s institution to the NETRF cell line research laboratory.

Make sure to talk to your doctor several weeks in advance of your procedure about your plan to donate excess tumor tissue. 

If you donate a portion of your tumor tissue to the NETRF Cell Line Project, you can also choose to donate tissue to the institution where you undergo your procedure. 

What happens to donated tumor tissue? 

Samples donated via Pattern.org are sent to the research laboratories at the Broad Institute where they will be used to develop tumor models as part of the NETRF Cell Line Project. Learn more. 

Who can donate tumor tissue?

Patients with neuroendocrine primary tumors or metastasis in the pancreas, small intestine, liver, or lungs may donate fresh tumor tissue from an upcoming procedure to the NETRF Cell Line Project.

Previous samples, already preserved or frozen, from earlier procedures are not eligible for donation. 

If you or a patient you know has an upcoming surgery, you can visit Pattern.org to learn more about donating tumor tissue to advance neuroendocrine tumor research. 

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Helen Salfen
1 year ago

I am being treated at Stanford and will be having surgery soon to remove sections of duodenum, ileum, and all of my mesenteric lymph nodes, ascending colon and gallbladder. My surgeon asked at the first appointment if i would be willing to donate tumor tissue. I absolutely will. Happy to do what i can to further research efforts.

1 year ago
Reply to  Helen Salfen


You may need to specify that you want excess tumor tissue to be donated to the NETRF cell line project through pattern.org. The Stanford lab may want to use your tumor tissue in its lab and preserve it in its tumor bank. Hoping you are able to participate in our project as well! We only need a tiny portion.


6 months ago

I had two rounds of surgery at Jefferson University Hospital and Abramson Cancer Research at Penn Hospital in 2014 and 2016 and I believe they captured the tissues but I am not sure if it went to you or stayed for their research programs. One question is there an option to donate tumor tissue, not from surgery but after one has passed away? I would think that this could provide valuable research material to work with and if it help to find a cure for others, but I would be willing to sign a paper that would allow for this, just as long as it was not 100% of my body. I need something for my family to have a funereal.

5 months ago
Reply to  msk

Thank you for your interest and questions. Tumor tissue donation should be fresh, living tissue removed from a recent surgery. Specimens that have been frozen or otherwise preserved from prior surgery are not eligible. For more information about tumor tissue donation, please visit or contact Pattern.org.