Cheap long-term survival follow-up by linking trial participants to registries
Trials often stop following patients once the main result is in, so we never learn whether the drug extended life. Linking participants to national death and cancer registries costs almost nothing and would answer that question.
With participant consent at enrolment, trials link identifiers to national death indices and cancer registries so that OS and second-cancer follow-up continues indefinitely at negligible cost after study closure. Regulators require OS reporting at 5 and 10 years for drugs approved on surrogate endpoints, using this linkage. Precedent: registry-linked follow-up in Nordic and UK trials and in US cooperative-group studies via the National Death Index.
- Trial design, endpoints and cost · A phase 3 trial takes years and hundreds of millions of dollars, and often answers a question that has already moved on.
- 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.
Pages like this
not linked directly; found by shared links- IdeaEvery patient on an accelerated-approval drug enrolled in a registry until confirmation
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