Donate Your Tumor Tissue to Help Advance Rare Cancer Research
Every year, thousands of people are diagnosed with rare cancers. Because these cancers are uncommon, scientists often struggle to find enough tumor samples to study, and this slows progress toward new treatments. By donating leftover tissue from a biopsy or surgery, you can directly support research that may help future patients with rare cancers.
Why Your Donation Matters
Rare cancers affect fewer than 15 people per 100,000 each year. Because they are so uncommon, each sample is incredibly valuable. Your donated tissue can help researchers:
- Understand how rare tumors grow and behave
- Develop better lab models of rare cancer
- Test new therapies that might otherwise never be explored
- Identify drug vulnerabilities that could lead to future treatments
- Accelerate discoveries for patients who currently have very few options
What Tissue Is Used?
We only use leftover tissue that is not needed for your clinical care. This means:
- Your medical team always keeps everything required for your diagnosis and treatment.
- Only extra tissue that would otherwise be discarded is used for research.
- No additional procedures or biopsies are needed.
- If no extra tissue remains after clinical testing, you will not be asked for anything more.
What Happens to the Donated Tissue?
Your tissue may be used to create special research tools that allow scientists to study your tumor in the lab, including:
- Microtumors (tiny tumor slices that preserve the tumor’s natural environment)
- Organoids (3D spheroids grown from your cells)
- PDX models (tumor samples grown in mice for research)
- Molecular profiling (DNA, RNA, or protein analysis to understand tumor biology)
How We Protect Your Privacy
Your privacy is extremely important. All samples are:
- Coded with a unique ID
- Stored securely in controlled research facilities
- Separated from your personal information
- Accessible only to approved study staff
- Shared only in de-identified form with qualified researchers
Does Donating Tissue Affect My Clinical Care?
No. Donating tissue:
- Will not change your treatment
- Will not delay your surgery or biopsy
- Will not affect your relationship with your medical team
- Is completely optional
You may also withdraw your permission later if you change your mind.
Who Can Donate?
You may be eligible if you:
- Are having a clinically indicated biopsy or surgery that is scheduled less than 6 months in the future. If the procedure is outside the Seattle, WA area, we need about 72 hours advance notice
- Have been diagnosed with a rare cancer (as defined by the NCI)
- Are willing to donate leftover tissue
- Can provide informed consent in English
- Are any age. There is no age limit.
What Is the Consent Process?
You will:
1. Receive a consent form explaining the study
2. Have the opportunity to ask questions
3. Sign electronically, if you choose to participate
Parents or guardians provide permission for children. Children ages 7–12 also sign a simple assent form.
How Is My Tissue Used in the Future?
Your specimen will be stored in the Fred Hutch rare tumor repository and may be used for:
- Cancer biology research
- Drug testing studies
- Future discoveries related to rare cancers
- Approved collaborations with other scientists
Your identity will always remain protected.
Will I Receive Results?
Because these are research studies, not clinical tests, results are not returned to patients. However, discoveries made from donated tissue may help guide future treatment approaches for rare cancers more broadly.
How to Participate
If you’re interested in donating leftover tumor tissue, click to enroll: https://redcap.link/rarerepository-intake
To enroll, you will need the:
- name, phone number and email address for your physician or oncologist,
- name, phone number and email address for your surgeon (may be the same as physician), and
- name, direct phone number and email address for a staff member point of contact who is responsible for coordinating the surgical collection. Please work with your surgeon to identify the correct point of contact.
If you have questions or would like more information:
Phone: 206-667-5650
Email: rarecancers@fredhutch.org
Thank You
By donating your tissue, you are contributing directly to scientific progress in rare cancers, an area where research is urgently needed. Your generosity may help change the future for patients and families facing these diseases.