Pattern.org and the Pattern Biobank

Pattern.org is the Rare Cancer Research Foundation's platform for patient-directed donation: a person registers, is matched to a research project, signs the consent online and gives details of their procedure, and the foundation arranges for leftover tissue or fluid to be collected from their hospital and sent overnight to the researchers. The foundation says donation is possible with any provider at any hospital, at no cost to the patient, without affecting care, that a donation can be withdrawn at any time, and that the models and data generated are made openly available to cancer researchers. When no project needs a sample immediately, it is stored in the Pattern Biobank, which accepts fresh tumour and matched normal tissue, blood, FFPE blocks, frozen tissue, PBMCs and plasma, and distributes samples to projects the foundation has approved; patients can also pay to store their own tissue or blood for future clinical use. Researchers use donated tissue to grow lasting laboratory models of the cancer (cell lines and organoids) and for DNA, RNA, exome and single-cell sequencing. Its listed studies include the INSIGHT biobank for ocular melanoma, run with A Cure In Sight, and the Rare Cancer Data Initiative with Case Comprehensive Cancer Center and the Alliance for Rare Cancers. The foundation's tissue donation page lists about 60 eligible cancers, mostly sarcomas, rare carcinomas, rare kidney cancers and rare melanomas.