New biobank to lay foundation for neuroendocrine tumor research

The mission of cancer research – to find better and more effective ways to treat or prevent cancer – begins with a better understanding of the disease. Knowing how a cancer begins and how it grows is an important first step toward fighting it and has led to remarkable advances in oncology.

But for rare cancer types like neuroendocrine tumors (NET), those advances have been few and slow. Research lags for the simple fact that the cancer is very rare, and each of the many subtypes is even more rare. Because far fewer people develop NETs than breast or lung cancer, for example, scientists have limited cases to study. No one cancer center has enough cases of the disease to make meaningful conclusions about it and advance the field.

In establishing the Neuroendocrine Tumor Biobank, Roswell Park aims to assemble the nation’s largest collection of NET cases – including biospecimens such as tumor and blood samples, plus patient medical and lifestyle information. Then we can finally begin to get some answers to our questions about neuroendocrine tumors, such as: What are the risk factors? What makes this cancer grow or spread? and How can we treat it more effectively?

How You Can Help

If you have been diagnosed with a neuroendocrine tumor, I urge you to consider participating in the NET Biobank. Your participation is voluntary, comes at no cost to you, and involves these important steps:

1. Fill out a questionnaire detailing your personal medical and treatment history.
2. Donate a small vial of blood, which can be drawn by your own physician or a laboratory near you.
3. Donate a sample of your biopsy or tumor (removed in a previous surgery). If you have had your neuroendocrine tumor biopsied or removed, we would ask your permission to have a small sample of that tumor sent to us from the facility that performed your surgery.

It’s estimated that about 170,000 people in the U.S. are living with neuroendocrine cancers. Collecting information and biospecimens from that many patients in one place would speed NET-focused research and lead to new treatment advances.

To get started, submit this online Pre-Screening form and we will contact you to discuss how you can be part of changing how we approach this cancer.