Rare Cancer Tissue and Fluid Donation
Your tissue and fluid can help unlock the discovery of breakthrough treatments for rare cancers.
Why is tissue and fluid donation important to cancer research?
One of the most impactful ways a person with cancer can support research is by donating a sample of their tumor tissue or fluid. Researchers rely on tumor samples to test new drugs, develop new treatments, and learn more about the disease. By donating a tissue or fluid sample, patients are helping researchers learn about cancer and build a better future for patients and their families.
Understand disease pathways & mechanisms
Understanding the fundamental mechanisms of each cancer—how and why it forms, why it persists, and what causes it to spread through the body—is critical to finding ways to slow or stop cancer. It may be surprising to learn how much we don’t know about the basics of rare cancers but new areas of basic research, including the impact of changes within a patient’s DNA, how each cell differs from others within a tumor, how the environment in which a tumor grows impacts its progress, and how well an individual’s immune system mounts a defense against the cancer, are the key to improving patient outcomes.
Development of New Therapies
By studying donated tissues and fluids, researchers can identify new therapeutic targets. In many cases, this has led to the creation of more effective treatments with fewer side effects than traditional chemotherapy and radiation.
Precision Medicine
Tissue and fluid samples help researchers understand how cancer behaves in different people, paving the way for precision medicine. This approach tailors treatment to the individual's exact tumor type, increasing the chances of successful outcomes.
How does tissue donation work?
Tissue donation involves taking biological tissues from an individual who is undergoing a medical procedure such as surgery or fluid drain. Often “excess” tissue (i.e. tissue not needed for the patient’s care) remains after medical procedures and is usually destroyed or stored for potential future use by researchers.
When you register through our tissue donation website, we handle all the logistical and collection details with your clinician(s) and hospital to collect some of the excess tissue so you can focus on your health and upcoming procedure. Of course, if you’d like to discuss donating your tissue through Pattern.org with your doctor as well, that’s absolutely fine, just not required.
We leverage our extensive biologistics experience to coordinate the safe and secure transportation of the living tissue from your medical institution immediately post-procedure and overnight it into the hands of the designated researchers. When there is no immediate research opportunity, we safely store the tissue in our biobank for a future planned or anticipated research study.
Patients from all backgrounds and communities are encouraged to donate their tissue and data to research in order to better understand and treat the diverse landscape of cancer patients.
120+
Hospitals collaborated with
95%
Tissue Collection Success Rate
65+
Rare Cancer Models Developed
Our Work
Since 2017, the Rare Cancer Research Foundation (RCRF) has helped patients donate their tissue directly to researchers from over 122 hospitals, resulting in 65+rare cancer research models that have already provided countless research opportunities, scientific discoveries, and urgent hope.
How to Donate Tissue
STEP 1
Register on Pattern.org, and you'll be matched to a research project.
STEP 2
Read the matched research project description about the sponsors and goals.
STEP 3
Read and electronically sign the consent online. This is critically important as it details your rights and allows the Pattern.org team to facilitate your participation.
STEP 4
Provide a few more details about your clinical care, including your healthcare providers and your procedure date. Once you finish, we'll start to work on collecting your tissue or fluid donation.
What Cancer Types Are Eligible for Tissue Donation with Pattern.org?
Angiosarcoma
Cardiac Angiosarcoma
Uveal Melanoma (Ocular Melanoma)
Leiomyosarcoma
Clear Cell Sarcoma
Liposarcoma
Desmoid Tumor
Alveolar Soft Part Sarcoma (ASPS)
Anaplastic Thyroid
Medullary Thyroid
Glioblastoma Multiforme (GBM)
Neuroblastoma
Neuroendocrine Cancer - Pediatric
Nut Carcinoma
Chromophobe Kidney Cancer
Collecting Duct Kidney Cancer
Papillary Kidney Cancer
Translocation Kidney Cancer
Renal Medullary Carcinoma
Malignant Rhabdoid Tumor (MRT)
Atypical Teratoid Rhabdoid Tumor (ATRT)
Merkel Cell Carcinoma
Mucosal Melanoma
Acral Melanoma
MET Lung Cancer (fluid or tissue)
Adrenocortical Carcinoma
If your cancer is not listed here, please get in touch with us to see if there are other ways you can contribute or find additional resources for you.
Giving you control of your tissue
Pattern.org empowers patients to enable the advancement of treatments through tissue donation and data sharing with researchers. It differs from hospitals that collect tumor tissue for research in some important ways:
You're In Charge
We enable cancer patients to donate their tumor tissue to researchers directly, even those not at the treating institution.
We Share
Unfortunately, not all hospitals collaborate with scientists to ensure your tissue makes the biggest impact. We make all successful models and generated data openly available to the worldwide cancer research community.
Now, Not Later
We get your tissue to labs for immediate use rather than storing that tissue for the future.
Anywhere, Anytime
Not all hospitals offer tissue donation. With Pattern.org, you can donate your tissue with any provider at any hospital at no - cost to you and it won’t affect your care.
Donating your tissue samples and medical data is a choice.
You always have the choice to donate your medical data and tissue samples, and you can change your mind at any time, even after making a donation.
If you decide to withdraw your donation, you can ask us to remove or destroy your donated data and any remaining samples. We will discuss your options and the next steps with you.