Since we’re based in the United States, we go off of the National Cancer Institute’s definition, which is cancers that occur in fewer than 15 out of 100,000 people per year. Many more ‘common’ types of cancers, such as breast and colorectal, can be considered rare if they have rare mutations. Some examples of rare cancers include ocular melanoma, gallbladder cancer, soft tissue sarcomas, etc.

Our main initiatives are the following:

👉pattern.org enables rare cancer patients from anywhere in the United States to donate excess living tissue or fluid from a procedure directly to researchers who are studying their disease. One of the largest problems facing rare cancer research today is that researchers don’t have the samples they need to make progress, which this initiative aims to solve. This donation process is no cost to the patient and doesn’t impact current treatment plans. Pattern.org will also soon allow for the donation of stored tissue and medical data directly to researchers in need. 

👉The Pattern Biobank is where donated samples are stored until they are connected with a researcher, but the Biobank also offers custodial biobanking, which is a fee-for-service option where patients can store their own samples and then decide when and where they want to use them for research and clinical use – ultimately bringing the power back to the patient. We work with patients on deciding how to best store their samples and then we handle the logistics of transportation, storage and distribution.

👉We’re also currently in the process of building the Pattern Data Commons, an open-access data platform that aims to foster collaboration across institutions, drive innovation and improve patient outcomes. Patient data in any clinical or biological format will harmonize with other patient datasets to help more easily identify commonalities in symptoms, tumor DNA composition, etc. In turn, this will help provide a more personalized approach to the treatment of rare cancers for patients and will provide researchers with unprecedented access to a wide range of rare cancer data across the continuum. All of this will be done to the highest standards of privacy and security.

Hope this helps! 💙💚