Let patients themselves donate their records and samples for ultra-rare cancers
For very rare cancers, patients are scattered across countries. Patient-driven projects can gather records, saliva and tumour samples by post and share the data openly.
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.
- Rare and paediatric cancers without markets · Taken together rare cancers are a fifth of all cancers, but each one alone is too small for a company to invest in.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
- Patients lack understanding, navigation and agency · Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
Pages like this
not linked directly; found by shared links- IdeaA global rapid tissue donation network for metastatic disease
Shares cBioPortal for Cancer Genomics, AACR Project GENIE, Whole-exome & whole-genome sequencing, Data silos.
- IdeaLink every national cancer registry to tumour genomics
Shares AACR Project GENIE, Whole-exome & whole-genome sequencing, Data silos, Rare and paediatric cancers without markets.
- IdeaOne legal framework for pooling rare cancer data across borders
Shares Data silos, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
- IdeaPool every multi-sample tumour genome into one open evolution atlas
Shares Broad Institute of MIT and Harvard, Whole-exome & whole-genome sequencing, Data silos.
- IdeaA funded expert second opinion for every new high-stakes or rare cancer diagnosis
Shares Patients lack understanding, navigation and agency, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
- IdeaAn organotropism atlas that predicts where a cancer will spread
Shares cBioPortal for Cancer Genomics, AACR Project GENIE, Data silos.
- IdeaAn international consortium pooling the outcome of every treated child with cancer
Shares Data silos, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
- IdeaEvery tumour genomic report machine-readable and deposited nationally
Shares cBioPortal for Cancer Genomics, AACR Project GENIE, Data silos, Rare and paediatric cancers without markets.