Frequently Asked Questions
How does Pattern.org work?
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 cancer tumor on your behalf.
Will research using my donated tumor contribute to my own medical care?
The research result using tumor samples and associated data will not affect or alter your current care.
What is an informed consent?
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.
Who can I talk to if I have questions about this website?
Who can I talk to if I have questions about a research project or information on a consent form?
You can contact the individual listed on the consent document.
Will I receive the result of any research done on my tumor?
You will not receive results on any research done on your tumor.
Is there anything I need to do after I complete the forms?
No. Your doctor may ask you to confirm your decision when you arrive for surgery.
Does donating my tumor affect the surgical procedure?
No. We are requesting only excess tissue from your surgery that isn’t needed for your medical care.
Why should I consider donating my tumor to research?
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.
How does my doctor know what to do once I complete the forms?
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.
Will anything happen if I decide not to participate?
The donation of your tumor will have no impact on your medical care.
What if I decide I don’t want to participate prior to my donation?
Inform Pattern.org and your surgeon of your decision immediately.
What if I decide I don’t want to participate after my donation?
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.
How long before surgery do I need to complete the consent?
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.
Is there a cost to me?
There is no cost to patients to contribute tissue to research through Pattern.org.
Can I donate my tumor if I'm not receiving care in the United States?
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.
Do you accept monetary donations in memory of a loved one? If so, what’s the best way to coordinate those donations?
Yes. Thank you for considering us for memorial donations!
Many families have found it beneficial to use verbiage such as: "In lieu of flowers, memorial donations may be made to the Rare Cancer Research Foundation online at https://rarecancer.org or 703 Foster St., Durham, NC 27701" in the obituary.
Donors can indicate their gift is in memory of a loved one; we'll notify the family that the donor has made a memorial gift.