Pre-registration and results reporting for real-world cancer studies
Just as clinical trials must be registered before they start, studies using hospital data should be registered too, so the failed or unwelcome ones cannot quietly disappear.
Real-world studies are prone to selective reporting and analytic flexibility; there is no registration requirement. The proposal creates a registry for observational oncology studies (protocol, analysis plan, data source, funder) with results deposition within 12 months, required by journals, regulators considering RWE, and funders. The EU PAS register and the RWE Transparency Initiative are partial precedents.
- Weak real-world evidence and registries · We do not reliably know what happens to patients after approval, so we cannot tell which drugs deliver in practice.
- Failures are hidden · Negative trials, failed drugs and abandoned programmes are rarely published, so the same mistakes are repeated.
- Preclinical results do not reproduce · Fewer than half of landmark cancer biology findings reproduce when someone else tries.
Pages like this
not linked directly; found by shared links- IdeaAccredited trusted research environments with curated cancer tables
Shares Preclinical results do not reproduce, Real-world evidence.
- IdeaRecord what happens when doctors use cancer drugs off-label
Shares Failures are hidden, Weak real-world evidence and registries, Real-world evidence.
- IdeaLinked prescribing and outcome data to find drug interactions with cancer therapy
Shares Weak real-world evidence and registries, Real-world evidence.
- IdeaWearable activity data as a validated real-world endpoint
Shares Weak real-world evidence and registries, Real-world evidence.
- IdeaA global ledger of negative results and failed compounds with mandatory deposition
Shares Preclinical results do not reproduce, Failures are hidden.
- IdeaNo mCODE, no payment: tie oncology reimbursement to a minimal structured record
Shares Weak real-world evidence and registries, Real-world evidence.
- IdeaGood practice standards and inspection for real-world data sources
Shares Weak real-world evidence and registries, Real-world evidence.
- IdeaOne international registry, not one per country, for conditional approvals
Shares Weak real-world evidence and registries, Real-world evidence.