What’s New On pattern.org? Learn More About Our Expansion
pattern.org is an important initiative of the Rare Cancer Research Foundation that has been around since early 2017. Since its inception, the primary goal has been to connect fresh tissue donations and the corresponding medical data from rare cancer patients directly to researchers studying their disease, allowing patients to actively participate in research by doing their part and allowing researchers to make much-needed progress.
Earlier this fall, pattern.org was proud to announce the expansion of the program beyond fresh tissue – now, participants can also donate their medical records, stored tissue, or combinations of both, depending on their rare cancer type. Fresh tissue and fluid donation will continue to be accepted, and data donation from genomic sequencing reports will also be accepted to our Pattern Data Commons, an open-access platform that will revolutionize rare cancer research and subsequent care. This expansion of pattern.org was designed to be more comprehensive of a patient’s journey and to give them more opportunities to be a part of positive change.
So, why are these different types of donations important?
Fresh tissue donation is critical in rare cancer research because it allows scientists to study living cells in real time, develop disease models, and test new therapies directly on tumor samples.
Stored tissue donation, often preserved from prior biopsies or surgeries, expands research opportunities by making valuable samples available even years after collection, enabling larger studies and comparisons across patient populations.
Medical record donation provides the essential clinical context, such as diagnosis, treatment history, and outcomes, that researchers need to interpret findings and connect lab discoveries to patient experiences.
Genomic sequencing data donation helps researchers uncover the genetic drivers of rare cancers and identify potential treatment targets. Because each rare cancer affects so few people, shared data is essential to find meaningful patterns and advance discoveries faster.
All together, these donations form a comprehensive foundation for advancing understanding and treatment of rare cancers. Our hope is that researchers can use all of this donated information to find patterns, hence the name of the program, across rare cancer types and make powerful discoveries that will benefit all rare cancer patients.
