A single oncology trial data trust with mandatory deposit within eighteen months
Every cancer trial's anonymised patient-level data would go into one trusted repository within eighteen months of completion, with a single access committee, so researchers can re-analyse, pool and learn from trials that today stay locked up.
Consolidate the existing sharing platforms (Vivli, Project Data Sphere, YODA, ClinicalStudyDataRequest) into a single oncology data trust with a legal duty to deposit individual participant data, protocols and analysis code within eighteen months of primary completion for all trials whose results support a regulatory decision or that receive public funding. One independent access committee, standard data formats (CDISC), a secure analysis environment and a public catalogue. Trials in oncology already have among the highest voluntary sharing rates but access remains slow and fragmented, and negative or discontinued trials are rarely deposited at all.
- Secrecy and intellectual property block collaboration · Companies with complementary drugs rarely test them together, and data that could answer questions stays locked up.
- Failures are hidden · Negative trials, failed drugs and abandoned programmes are rarely published, so the same mistakes are repeated.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
Pages like this
not linked directly; found by shared links- IdeaEnforce individual participant data sharing as a condition of publication and funding
Shares ClinicalTrials.gov, Secrecy and intellectual property block collaboration, Data silos.
- IdeaA legal right to obtain marketed cancer drugs at cost for combination trials
Shares An antitrust safe harbour for cross-company combination trials and data pooling, Secrecy and intellectual property block collaboration.
- IdeaAutomatic offer of shelved cancer assets to non-profits after two years
Shares A public registry of stalled academic assets and shelved company compounds, Secrecy and intellectual property block collaboration.
- IdeaAn oncology patent pool for combination trials across companies
Shares An antitrust safe harbour for cross-company combination trials and data pooling, Secrecy and intellectual property block collaboration.
- IdeaA permanent neutral non-profit sponsor for multi-company platform trials
Shares A shared library of pooled control arms to shrink and speed future trials, Secrecy and intellectual property block collaboration.
- IdeaA common consent and material transfer template for tumour biobanks
Shares Secrecy and intellectual property block collaboration, Data silos.
- IdeaA global ledger of negative results and failed compounds with mandatory deposition
Shares Secrecy and intellectual property block collaboration, Failures are hidden.
- CompanyPatient Data Vault (data-vault.health)
Shares ClinicalTrials.gov, Secrecy and intellectual property block collaboration, Data silos.