Rare Cancer Tissue Donation

Your tissue can help unlock the discovery of breakthrough treatments for rare cancers.

Why is tissue 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. Researchers rely on tumor samples to test new drugs, develop new treatments, and learn more about the disease. One of the most important ways a person with cancer can support research is by donating a sample of their tumor/tissue. Researchers rely on tumor samples to advance our understanding of cancer, test new drugs, and develop new treatments. By donating a tissue 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, 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 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 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.

FAQs

  • Tumor samples, blood, bone marrow, and healthy tissues are among the most needed for comprehensive cancer research.

  • Tissue donation comes from a regular surgery you'd be having anyway - a biopsy or a resection - but it sends a small piece of it to research. Once you sign up, we'll contact your surgeon and then coordinate the logistics for a part of your tissue (tumor, blood, bone marrow, etc.) to be shipped to a researcher within hours of your surgery.

  • Researchers anonymize tissue samples and follow strict privacy protocols to protect donor information.

  • Donated tissue is sent directly to a researcher or temporarily stored until we can match it with a researcher who will use it to study your disease.

  • It's always your choice to donate tissue samples or medical data, and if you decide to do so, there are rules and ethical guidelines in place to protect you. Your donated tissue can help drive research that helps others in the future and researchers can only use your biospecimens if they have your consent.

  • Pattern.org enables cancer patients to directly donate their tumor tissue and medical data to research. Once you enroll, Pattern.org will link you to a specific research project studying your cancer. You can then learn about the study and review and sign an informed consent if you wish to contribute. If you choose to contribute, we will arrange the transfer of your tissue donation on your behalf.

  • Tumor donations help scientists to learn more about cancer. Without tissue samples to study cancer, it is difficult to understand the disease well enough to identify its vulnerabilities.

  • The research result using tumor samples and associated data will not affect or alter your current care.

  • The process by which a patient learns about and understands the purpose, benefits, and potential risks of a medical procedure or research study, and then agrees to receive the treatment or participate in the research. Informed consent generally requires the patient or responsible party to sign a statement confirming that they understand the risks and benefits of the procedure, treatment or research participation.

  • You can contact the individual listed on the consent document.

  • You will not receive results on any research done on your tumor.

  • No. Your doctor may ask you to confirm your decision when you arrive for surgery.

  • No. We are requesting only excess tissue from your surgery that isn’t needed for your medical care.

  • Pattern.org will get in touch with your doctor and surgical institution to provide instructions for what is needed to fulfill your request for donation.

  • The donation of your tumor will have no impact on your medical care.

  • Inform Pattern.org and your surgeon of your decision immediately.

  • You can visit Pattern.org or contact the number on your informed consent to revoke your consent at any time. If you revoke your consent, your medical care will not change.

  • If you decide you want to contribute excess tissue to a research project, we ask you complete the informed consent at least a week before your scheduled date of surgery.

  • There is no cost to patients to contribute tissue to research through Pattern.org.

  • If your procedure or biopsy will be outside the continental United States, unfortunately, we are not able to accommodate your tumor tissue donation at this time.