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Patients with ultra-rare cancers are scattered across countries, beyond any single hospital's reach. Patient-driven projects that recruit online, post saliva and tumour sample kits and release data openly have already produced genomic findings in angiosarcoma; sustainability and international consent rules are the open problems.
Patient-partnered research projects have assembled cohorts in angiosarcoma, metastatic breast cancer and other diseases by direct online recruitment, mailed sample kits, and consent for medical record retrieval and open data release. The model reaches patients that no single hospital can, and produced genomic findings in diseases previously too rare to study. Sustainability and international consent harmonisation are the open problems.
Shares cBioPortal for Cancer Genomics, AACR Project GENIE, Data silos, Whole-exome & whole-genome sequencing.
Shares AACR Project GENIE, Data silos, Whole-exome & whole-genome sequencing, Rare and paediatric cancers without markets.
Shares Rare cancers are not so rare: the rare cancer burden in Europe, AACR Project GENIE, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Cancer Models (PDCM Finder) & HCMI, Rare cancers are not so rare: the rare cancer burden in Europe, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Rare cancers are not so rare: the rare cancer burden in Europe, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares cBioPortal for Cancer Genomics, AACR Project GENIE, Data silos, Rare and paediatric cancers without markets.
Shares Broad Institute of MIT and Harvard, Dana-Farber Brigham Cancer Center, Whole-exome & whole-genome sequencing.
Shares Broad Institute of MIT and Harvard, Data silos, Whole-exome & whole-genome sequencing.