At RCRF, we are actively working to challenge the current status quo that exists in cancer research, from the lack of collaboration among researchers to the lack of available samples and data needed from rare cancer patients for progress to be made. Researchers that work with us are required to broadly share the results of their work, whether that be models or data they generate, so that the research community worldwide can build upon those learnings.

We are uniquely able to acquire live tissue and fluid samples from any institution across the United States and help you to direct your samples to researchers who currently need them for their high-impact projects. Additionally, we are currently building a fully patient-powered (yes, by you!) open-source data commons that brings all of the pieces of the puzzle together.  Please join us today so you can help accelerate rare cancer research initiatives and learnings!

Pattern.org enables cancer patients to directly donate their tumor tissue, fluid and/or 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 donation on your behalf.

Oftentimes, if you choose to donate your sample to research, unless there’s an active research project for your cancer type at that or an associated research facility, your sample may be stored unused for a long period of time or permanently.   If you receive care at a hospital where there is no associated research facility, your biological samples will often end up as disposable waste. 

At RCRF, we are able to accept and process your tissue or fluid sample and then directly connect it to a researcher in need or temporarily store it - but we actively work to put it to use as soon as possible.  Furthermore, researchers that receive samples through RCRF are required to share the efforts of their work broadly with scientists across the world.

Yes!  At RCRF we feel collaboration with stakeholders across the rare cancer ecosystem is critical to drive innovation and accelerate breakthroughs.  If you work at an advocacy foundation and are interested in partnering with us, please contact us at info@rarecancer.org.

The types of cancer we collect may vary at any given time based upon the needs of the research community so please visit Pattern.org to see if your cancer is currently being collected.  And if your cancer isn’t currently being collected, please let us know of your interest to donate tissue and we’ll work to see if we can find a research project that can utilize your tissue.

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

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

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

De-identified data refers to information from which all personal identifiers such as names, birthdates, addresses, phone numbers, etc. have been removed or masked to prevent the identification of individuals. This process ensures that the data cannot be linked to a specific person, either directly or indirectly, using any reasonably available means.

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.

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

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

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 sample can help drive research that helps others in the future and researchers can only use your biospecimens if they have your consent.

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

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

Yes, we are now accepting “stored” tissue for a number of rare cancer indications!  Please go to Pattern.org to learn more.  If we aren’t currently accepting donations of your particular cancer, please let us know you’re interested in donating tissue and we’ll work to see if we can find a research project that can utilize your tissue.

For almost all of the studies we support, we are able to accept primary, recurrent, or metastatic tumor tissue.

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.

In order for us to coordinate all of the necessary logistics and communicate with any of your care team as needed, we strongly recommend at least 7 days before your procedure. 

If for some reason you have less time but still want to donate, please register and consent on Pattern.org as soon as you can and we’ll do our best to coordinate a successful tissue collection.

Absolutely! If you previously donated, please reach out to us at info@pattern.org or call us and we’ll be happy to coordinate another collection with your surgical institution.

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.

We are requesting only excess tissue from your surgery that isn’t needed for your medical care, so the surgical procedure is not affected or changed in any way.

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.

If it is prior, inform Pattern.org and your surgeon of your decision immediately. If it is after, 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.

Unfortunately due to the logistical and biological challenges associated with legacy body donations, we are unable to accept them at this time.