By Anna Greene, PhD, NETRF Chief Scientific Officer
Neuroendocrine cancers, such as neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs), are rare and complex. That makes every patient sample incredibly valuable, whether it’s a biopsy, tissue from surgery, or a tube of blood. With the right handling and planning, one sample can fuel many discoveries: from new drug targets to better tests that spare future patients extra procedures.
In 2025, the ENETS white paper on best practices for translational research in neuroendocrine neoplasms emphasized a central truth: in rare tumors like NENs, patient samples are the foundational currency for discovery. The authors call for centralized biobanking, standardized protocols for tissue collection, documentation of sampling sites, and integration across multi-omics platforms, all to ensure that every tumor or blood sample collected can be maximally leveraged.
That guidance spelled out the “what” and “how” for research labs and clinics. But it raised another question: What does that mean for patients, for their tissue and blood, and for ensuring those precious samples move science forward? This blog bridges the gap by translating the white paper’s standards into the patient context: why your sample matters, how it should be handled, what to expect, and what to ask.
Why your sample matters
- It powers discovery. Researchers learn how neuroendocrine cancer grows, spreads, and responds to treatments by studying real patient tissue and blood, not just cell lines.
- It speeds up answers for a rare disease. Because neuroendocrine cancer is uncommon, pooling samples across centers is essential. Standard ways of collecting and processing help your sample “talk” to others.
- It can help you and the next patient. Some studies are exploratory; others may identify biomarkers that guide therapy or help monitor disease over time.
What counts as a sample?
- Tumor tissue from biopsy or surgery (sometimes multiple small pieces from different parts of the tumor to capture its diversity).
- Blood (“liquid biopsy”) for circulating tumor DNA/RNA, tumor cells, and immune cells.
- Other fluids (less common): urine or saliva for certain research questions.
What happens to your tissue during care and research?
- Collection: Surgeons/pathologists remove or sample tumor tissue.
- Time is critical. The time from removal to processing (“cold ischemia”) can affect data quality. Teams that log and minimize this time protect the scientific value of your sample.
- Mapping & documentation:
- Taking samples from different tumor regions and photographing where they came from helps researchers understand heterogeneity (why one area responds to therapy but another doesn’t).
- Processing & storage (biobanking):
- Tissue can be fresh, frozen, or fixed in paraffin (FFPE), with each type suited for different tests.
- Blood is separated into plasma/serum and cells; some tubes include stabilizers to protect tumor DNA/RNA.
- Research use (now and later):
- One surgery can support multiple projects—organoid growth, drug testing on precision-cut tumor slices, sequencing, immune profiling, etc.—if teams plan together and handle carefully.
How research uses your sample
- Organoids/tumoroids: Mini 3D versions of your tumor grown in the lab to test drugs and study resistance.
- Spatial & single-cell tests: Show which cells are present and where they are inside the tumor.
- Liquid biopsy: Finds tumor DNA/RNA or cells in blood; may enable less invasive monitoring over time.
- Immune profiling: Looks at which immune cells are in your tumor and blood and how active they are.
- Multi-omics integration: Combines DNA, RNA, protein, and imaging to reveal subtypes and potential targets.
Your consent, your choices
- Informed consent should explain what’s being collected, how it’s stored, who can access it, and whether data are shared.
- You can often choose: clinical care only, care + future research, or specific projects.
- You can ask whether results come back to you (many research findings are not CLIA-certified for clinical use and won’t appear in your chart).
How to maximize the impact of your sample
- Bring it up early. Tell your surgeon/oncologist you’re interested in donating to research/biobanking before the procedure date.
- Ask for coordination. If multiple teams need samples, they should plan together so each slice is used efficiently.
- Consider multi-timepoint blood draws. Longitudinal liquid biopsies help scientists understand how tumors change.
- Share your story. Clinical context (medications, prior therapies, symptoms) adds crucial meaning to lab data.
What to expect (realistically)
- Not every sample can do every test. Small biopsies or heavily treated tissue may limit some analyses.
- Organoids may not always grow, and growth can be slow, especially for low-grade NETs.
- Research results are usually not immediate and often aren’t returned to your medical record unless performed in a certified clinical lab.
Common myths—cleared up
- “If I donate tissue, I’ll have less for diagnosis.”
Pathology gets what it needs first. Research uses excess tissue or pre-planned extra cores when safe. - “Research samples reveal my identity.”
Studies use coded, de-identified samples. Personal details are protected by strict ethics and data-sharing rules. - “Only tumor tissue matters.”
Blood (and sometimes normal tissue nearby) is key to understanding the immune response and building better non-invasive tests.
Bottom line
In neuroendocrine cancer research, the quality of the science begins at the bedside: good methods lead to better medicine. The way your tissue and blood are collected, documented, and shared determines what scientists can learn and how fast that learning helps patients. By asking a few focused questions and opting into biobanking when it’s right for you, you become a co-author of future breakthroughs.
If you’re a patient who wants to help accelerate neuroendocrine cancer research, there are several responsible ways to make your samples count:
- Ask your care team whether your hospital participates in a biobanking program or clinical trial that collects tissue and blood for research.
- Explore active clinical trials that include tissue or liquid biopsy collection. You can find these at ClinicalTrials.gov by searching for “neuroendocrine tumor” or “neuroendocrine carcinoma” and filtering for studies that mention biopsy, tissue collection, or biobank.
- Donate leftover tissue through Pattern.org — a nonprofit platform that allows patients to directly and safely contribute their leftover tumor tissue and blood to cancer research centers. Pattern.org coordinates with your hospital after diagnostic needs are met and covers all shipping and logistics. For many patients, Pattern.org is the simplest way to ensure your tissue reaches scientists working to develop better diagnostics and treatments for neuroendocrine cancer.
- Talk with your treating team early, before a biopsy or surgery, about your interest in supporting research, so the appropriate permissions and handling steps can be arranged ahead of time.
NETRF does not collect or store tissue samples, nor can we coordinate individual donations or retrieval from hospitals. Our role is to fund, connect, and amplify the scientists and biobanks that make use of these precious materials. But the choice to share your samples, whether through your care center, a clinical study, or a platform like Pattern.org, can help unlock discoveries that improve care for every person living with neuroendocrine cancer.
Good methods begin with good samples — and good samples begin with you.
Visit our NET Knowledge Center where you’ll find the resources you’ll need along your neuroendocrine cancer journey.